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April 16, 2010
WOW!!! I CANNOT believe it has been 3 months since I have written!!! It's hard to explain but I think I still needed some time to re-coup from all that was and if it's possible I think our lives are finally in a "normal" routine. This week (April 13th) marks 3 years since Abby was diagnosed. 3 YEARS!!! Can you believe it??? And today was her "8 month" visit....it has been 8 months since she stopped chemo and steroids and aside from some flouride and a little calcium + vitamin D, she is medication free!!! Her labs looked "great" today and everyone commented on how gorgeous she is...She looks sooo healthy and she has lost all of the puffiness from the steroids and you would never know that she was a cancer survivor unless you see her scar. I NEVER thought we would be here and yet here we are. Abby is so much happier, active, and confident; I realize now just how much all of the medications were stripping her of who she really was inside and I cannot tell you how nice it is to see this progression. Caroline turned 6 last month, she was just a baby when all of this happened; she will likely not remember any of it at some point. And my little Michael will be 3 at the end of June...little guy just finished potty training....life goes on...
I just renewed this website for 4 more years and will be figuring out how abby's angels can benefit other families. Lyn Giancotti's "Mommies Mobile Meals" is inspiring and I like to do something similar, fundraising for people in need for medical expenses, gas cards, meals, etc and would like to turn it in to a non-profit organization that can help someone in need. The very first thing I would like to do is donate some prizes/gifts/craft supplies to the child life program at UMass. Their program was so unbelievably helpful to us and I cannot imagine if it didn't exist. Anyway, lots to think about but I know that I want my children to learn and understand what it really means to show kindness to others and to reach out to those in need.
That's all for now but I plan on updating more frequently again.
January 2, 2010
Does anyone check in anymore??? Please respond and let me know...I have obviously taken a break and haven't quite decided what I am going to do because even though the cause of this whole blog thing was sad, I enjoyed writing. I was thinking of using Abbysangels to fundraise for others with a need like we had when we didn't even know we had it. It doesn't necessarily have to be a child with Leukemia, it could be anything where someone might just need a little extra help for whatever reason...maybe a husband or a wife had surgery and just needed a few meals, or maybe her house cleaned, maybe someone's father lost his job and Abbysangels could provide grocery gift cards, or pay their oil for a month, a pregnant mother on bedrest. Audra and I had discussed keeping it low key, do "mini" fundraisers like a book swap at the school, or maybe a bike decorating contest/parade and the town fair. My dad plans to continue the golf tournament...so we'd like to find a way to help people in the same says that we were helped....You might no someone in your community who has a serious medical issue or maybe someong that could just use a random act of kindness like some fresh flowers and a nice mug of coffee to brighten their day...ideas are floating...please forward me you input. Should I continue with Abbysangels? Writing about my life? Use this experience as a way to pay it all forward????
By the way, Abby's doing great...she has pneumonia right now but other than that she has been healthy, happy, energetic, and even a little outgoing! It's like "Wow" who is this girl? I realize now just how harsh those medicines were. She's a whole different kid. Just got her haircut for the first time today since she went for a shave with Grandpa back in the summer of 2007. It's loosing some of its frizz and getting softer...color is darker but she looks great. Her body has completely morphed back to itself. The swelling in her face and body are gone..
October 12, 2009
Time stood still yesterday.....I finally got my much awaited sigh of relief...there was a calm peacefullness unlike anything I had ever experienced before....serenity....This feeling was preceeded by one of the happiest days of my life...it was right up there with my wedding and birth of my children...we had an end of treatment celebration on Saturday and it was the most perfect day ever!!! Just sheer love and happiness; an amazing surge of positive energy , so many people who have given up so much of themselves in so many different ways to help us get through the past 2 1/2 years....I think I'm out of words, if only for a few moments...and it feels sooooo good!!!!!!!!!!!!!!
October 8, 2009
There's something to be said for staying local...when we decided to have Abby's treatment at UMass, we were asked many times, why we weren't going to Boston...I always thought about how lucky we were to live where we live...it might not always seem like it but we have the best schools and hospitals in the country and we have CHOICE...we may have snowstorms and cracked roads, but we have access to the best for our children....As Abby commences her treatment, I cannot imagine going anyplace else. She was treated like an individual and we were always given the attention we needed. Whether it was a phone call with a simple question or a panic wave of fear, our questions were answered thoroughly, timely, and with the sensitivity as if it were the first time they ever had to deal with it. It was easy to contact staff members and even though they asked for all of your info on the message machine, all I needed to do was say, "It's Abby's mom" and they knew exactly who we were and what was going on with us. That's INVALUABLE when you are going through something like this.
Clinic went well on Monday, Abby had her labs drawn peripherally which was SO EASY (as I am typing, Michael is running by me with scissors---have to go take care of that first!---where did he get them???)...."What to Expect" (Much different from the original "What to Expect When you are Expecting" handbook you get when you are pregnant) now type things were reviewed with us. Abby's immune system will be compromised for about 6 months with higher level immunity needing about 11 months. On her 1 year anniversary, she will have her blood tested to see what immunizations she will need repeated and also get her 5, 6, & 7 year old shots. Other than that, we only need to bring her in for monthly physical and labs, and if she has a high fever. At the conclusion of the visit, the entire team entered the room and sang Abby an "end of chemo" song...they brought her cake, gifts, and a HUGE recordable card. The social worker presented Abby with a Micky Mouse medal from a marathon---apparently these marathon runners donate their medals to pediatric cancer survivors---how amazing and some serious BLING! We would set the airport scanners off for sure; maybe not even be able to get out of the revolving hospital doors....Anyway, you have to think that not only was Abby's treatment a success for our family, it was a success for the medical community at UMass, who have devoted their careers to treating children with this serious disease. It must be amazing for them to realize all of the positive changes that they have witnessed in their lifetime and that with research, experiment, funding, and time, there can abosulely be a change in outcome for something that was once untreatable....I was so touched by their celebration but for some reason, still couldn't release that sigh of relief I am so waiting to have happen...
We returned to UMass on Wednesday to see the Orthopedic doctor...repeat x-rays confirmed the original diagnosis and Abby was casted...she chose blue and was really pretty excited about the whole thing....I really thought that now I wouldn't be missing any more work...oh, well..still holding out for that "Employee of the Year" title...maybe 2010??? Abby will have her cast for 4 weeks and will return to Orthopedic doctor in 4 weeks...fortunately, we will already be there for Abby's clinic visit...it has been 1 month since Abby stopped her steroids and chemo...
October 4, 2009
So it's been 10 days and wouldn't you know it, we were back at the hospital today...only this time it was for "normal" kid stuff...Abby has a buckle fracture of her distal radius...it just rolls off the tongue, especially now that I am officially a 4.0 student of A&P I & II....managed to surprise my sister with the most totally awesome 80s themed 40th celebration yesterday and during the "set-up" as my 3 children couldn't have been further up my you-know-what (and it rhymes with "what" or "grass", depending on what mood you are in), Abby was chasing a balloon (which she and Caroline were blowing up and setting free & driving me out of my ever lovin' mind) she slipped in the kitchen and hurt her wrist. I gave the matter it's due attention at the time (aren't I the epitome of a Norman Rockwell painting?) and managed to get the party going....Abby kept coming to me and going to Mimi looking for ice, hot packs, just plain old needing some lovin" and at least 3 people said something to me like, "this will be a transition for her" and I nodded, a little annoyed with Abby, thinking she was tired and seeking a little attention. Her wrist was a little swollen but she could move it and I really didn't think a trip to the ER would result in anything other than a $100 co-pay, more radiation that Abby didn't need, some x-ray bills, and a "it's bruised pretty well so give her Motrin as needed"---her liver could also use a break....but this morning it was still bothering her so John & I figured we should have it checked out...sure enough she needs a brace and tomorrow we'll need to call the orthopedist...luckily, we will already be at UMass for clinic so we can call the surgeon to check her stitches and port site, and maybe see an orthopedist there...3 for 1...wouldn't that be great? I told Abby, "What I really think we need is more time in a hospital together"...she didn't see the humor...
But Kerry's party was just amazing! Her friends had such energy, you could just feel the love in the room! She was surprised and was so happy...and I have to say there are not many people that would walk through the door and be thrilled to run upstairs and throw her hair in a banana clip and put on the 80s outfit selected especially for her...Happy 40th Kerry!!! You wear it well!! I love you so much and was so happy to see you have such a great time will all of the people that love you!
September 25, 2009
It's very strange but in a twisted way kind of nice to see Abby so "loopy"...we are in the waiting area now...they gave her a drink of vursed to make her relax before the anesthesia and she was so adorable....just smiling and super relaxed...probably not cool to say that you enjoyed seeing your child on drugs but under the circumstances it was just nice to have the whole needle/procedure thing happen with no fear in her eyes...Once she could barely hold her head up, they wheeled her away....it's so surreal, the whole thing. I didn't process any of this when she had her surgery in the beginning...I know I was pregnant and I remember the room, and even the nurse, but do not remember anything else...except that this time, there were no questions....we didn't have ANY questions...just nodded and signed the forms as if it was no big deal. And now we wait...the doctor asked us if we wanted to keep her port and I was so excited (again, twisted I know)..I wanted to have it but was afraid to ask. Maybe I'll put it in her time capsule.....This waiting area is really nice; when you work in a hospital and nursing homes, and then go to a hospital frequently, you really begin to notice all of the conveniences...I am on a leather sofa with my feet propped on a chair with flat screen tvs all over the place...I'm about ready to leave someone a tip...a little lavender in the air and a foot rub and I'll come here once a week....John went to grab some lunch and then it will be my turn...this whole thing is so crazy...a blur but yet so significant with specific details embedded a haze...how can so much be so vivid and clear and so much just be a blink of the eye...I think that's how life is in general...
Abby's cheeks look so pink and her "puffiness" seems a little decreased or maybe it just does to me because I have dreamed so much about seeing her as she should have been, not a sick, puffy, bald or fuzzy headed little girl. These drugs that do such amazing things for people do such horrible things to people. I will always struggle with the range of emotions I have had. I feel so guilty for feeling badly about the "vanity" things because in the grand scope of things, they don't really matter. But they are the visual reminders of what this was, is, and will always be...I felt robbed of these 2 1/2 years...I don't remember Michael's first 9 months of life...I just don't remember...I feel robbed of Caroline's young childhood, and robbed of what Abby was "supposed" to look, play, and feel like. That's the raw, god-awful truth..and I know it's dark and wrong on so many levels...I know all of the good that came from all of this and believe me I FEEL the good so often but underneath it all, that's the sheer truth. And then I feel so guilty for admitting that to even myself, never mind printing it for anyone to see....I feel guilty because we are LUCKY and BLESSED and there are so many families that are faced with health issues that are not filled with the hope of a positive outcome...there are families faced with tragedies far worse, families without the love, support, and encouragement that we have had...and every time I hear about any of these stories, I feel like, "wow...we had it so easy"...the bottom line is that when you become a parent, or when you allow yourself to love people and share yourself with others, you will also be faced with hurt, fear, and sadness...for the good stuff cannot exist without the other stuff....but as I have said before 1 good little thing overshadows 5x the bad stuff....Abby learned how to ride a bike finally and I guess I didn't even realize that she couldn't...she missed the summer when she was 4 and still didn't feel great the summer after so we just didn't have much time in the driveway...I mean she's pedaled around a few times but last weekend, on Autnie Kerry's long driveway, she called me outside to "show me something"...and then she hopped on her big girl bike and rode off pretty much into the sunset...and I dropped to the ground and cried. It was one of the happiest images I have ever seen....it might as well have been in a movie...there it was, this adorable little girl riding her bike down a long driveway...may as well have been golden rays around her and rainbows and butterflies (with sparkles of course) filling the air....it was beautiful....it will stay with me forever....That's what I am thankful for....I never would have had experienced that feeling the way I did if we didn't have the last 2 1/2 years. Life is just these moments and if I can just soak them up, they will absorb the ugly ones and wipe them away...
So now your eyes probably hurt from reading but what a release for me....
Just take a few seconds, sit back and watch those around you that you love...ignore the stuff that irritates you just for a few seconds and focus on something little, maybe a certain mannerism, or facial expression...just take it in and make that image set in your mind....as Cam Jansen would do, say "click" and hold on to it....
September 21, 2009
I know...it's been a while...I ended up sick in bed for 2 days and missed the golf tournament which was a huge success!! Thanks to all who attended, especially to my dad for organizing the whole thing and all of the Best Buy guys, & Mr. Steve Thurston.
An antibiotic and lots of rest did the trick....but still cannot seem to get organized....The girls have adjusted well to school but I have not. Their homework only consists of a little math and finding a picture beginning with a certain letter or something like that but it's still something to do and make sure is done...yada yada yada....The other part of me is so excited for their new adventures and activities. Caroline comes off the bus absolutely glowing...then melts down because she is so tired and adjusting to a full day schedule. I started taking my last nursing prerequisite and it is 2 nights a week which is a little too much for me so I melt down from adjusting to the full schedule...anyway...negativitiy aside...the weather has been absolutely FANTASTIC and we enjoyed some apple picking and baking this weekend...that is what New England is all about...do they go orange picking in Florida and make juice??? or go red rock viewing in Arizona??? We need the seasons, at least I do...So new school schedules, new kids activities, new tv lineup, football starting...September is a busy month!! But not too busy to add a surgical procedure...PORT REMOVAL ON FRIDAY!!!!!!!!!!!!!! I think then I'll finally allow myself to breathe........
September 10, 2009
The last week of steroids was pretty mild...now we know how much that Vincristine effected her...she was tired at night and needed to be picked up at school for 3 days in a row (THANKS boppa!!!) but at least tried to go....poor little Caroline had to come home on the bus by herself...and one day she didn't come home! I got a text from John (he was on bus duty for the afternoon and I was at work) that said, "Where's Caroline?"...EXACTLY what you want to get at work...there was some confusion at school about whether or not she was supposed to go to extended day so they kept her at school...which is the better outcome for sure...I cannot imagine if she did go on the bus and wasn't supposed to how scary that would be for her. So John found her and all was well.
We got the date for port removal today...she will have her surgery on Friday, Sept. 25th...hallelujah!! That port has been a PITA from the start but accomplished what it needed to in addition to a salmonella infection.
Just finished making a collage with the girls for the golf tournament tomorrow and they were so excited..having the most adorable conversation with each other; very matter of fact about everything...Here's a sample:
Abby: "Ca, tomorrow will be the last golf tournament"
Car: "Why, cause you're done with Leukemia?
Abby: "Well, we can still go there, we just won't get to rip tickets and there won't be pictures of me...the best thing about having Leukemia was getting crafts and I got time with mommy and daddy"
Car: "Yeah, I didn't get as much time with mommy and daddy" "But you were sooo cute when you were a baby"
Abby: "Ca, the worst thing was the needles and of course, the medicine"..
Very straight forward...casual conversation...so cute :)
September 4, 2009
Where do I begin?? I"ve been moonlighting a bit on facebook again...Today is an amazing day for 2 HUGE reasons...#1 John and I have been married for 10 years!! Quite an accomplishment even when you're not in Hollywood. We had envisioned a trip to Italy or Hawaii but we knew that wasn't going to happen...(maybe at 15 years???) but I took a trip today that in meaning is a gajillion (and I think that's more than a gazillion) times better even though the actual trip was rough...I took Abby for her last Vincristine chemo!!!! It was rough; they were unable to access her port after 6 tries...I had to hold her down several times and she was mad!! After they threw in the towel we still need to get peripheral labs and I gave them the go ahead to just do it quickly without EMLA...BIG mistake with Abby...she called me "stupid mommy" and then told me she was "wicked wicked wicked wicked wicked wicked mad" at me! When it was all over and she calmed down, I made her apologize to everyone...Talk about torn between feeling guilty and just having had it with this whole thing! So they were unable to give her the Vincristine but assured me it was no big deal to miss the last dose...also told me they were very confident in the results from her recent bone marrow biopsy so they might not need to do another one. They are going to discuss it more on Tuesday and then we will schedule her port removal for sometime in the next 2 weeks.....useless thing now anyway....as I am writing this I am realizing the magnificence of it all and beginning to cry...in a happy way...but thinking about how 10 years ago, John and I decided to start our journey together, our biggest decisions were what flowers to have at the church and what song to dance to....we've come a long way baby!! Who would have thought, after 10 years, we would have 3 beautiful children and endured one of the worst possible nightmares a parent could imagine. But we did it and we are doing it and still pretty darn happy....Coudn't have gone on this journey alone and so thankful to have such a great guy along for the ride....Here's to 10 more and some time we'll have that 2nd honeymoon :)
So we'll have an official date on Tuesday....5 more days of steroids and oral chemo and we ARE DONE!!!!
August 27, 2009
So Abby's ANC went back up and she went to 25% of her chemo dosing for her last month....I just love saying that word...last last last last!!! And I believe it I really do...she's been feeling great...went to Davis Farmland today (poor little 3rd child Michael thinks all animals are dogs...needed a little hands on education) with Julie and her kids...didn't get to see that new little baby though! The kids had a great time...when I asked Caroline and Abby what their favorite part of the day was, they both answered, "EVERYTHING!" That says it all doesn't it...except Caroline had to add, "I didn't like sitting on hay"....
A few precious days left of summer and then another one off to Kindergarten...her 5 years at home flew but I am so excited for her! She is so ready and I can't wait to see all of her work and hear about her new adventures!
August 16, 2009
So Abby came home Wed evening...counts still low but no fever and the neck pain was gone....the bad news was that she had to resume the steroids on Tuesday night so I got to take a cranky little girl home...I felt so guilty feeling frustrated about the steroids; I mean, we just got the best news and I still had a hard time dealing with it....Caroline still just can't understand why her sister isn't the "same" for one week each month. She knows the "lingo"...knows Abby has Leukemia and is taking the "hungry/cranky" medicine...knows that Abby can't help it...but none of that helps her understand...for crying out loud, I COMPLETELY understand that it's the medicine and I still react to it, knowing she can't help it...how can I expect a 5 year old to? Auntie and Audra to the rescue again, taking Caroline to friends houses, camp, swimming, boating...giving her some of the best days of her life and away from her cranky sister....invaluable! Abby got her last steroid dose this am so hopefully, she'll be back to her self and we will only ever have to endure this steroid nightmare 1 more week!!!! Brought Abby for labs tonight, will hope for an increased ANC and that she can resume her chemotherapy and get that last month of chemo in to finish off the bad guys!! GO GOOD GUYS!!! KEEP UP THE GOOD WORK!!!
August 12, 2009
"You are NOT to walk us down to the conference room no matter what" was what I told Dr. Grossman (and I confirmed and will never forget his name, believe me) when he finished Abby's bone marrow biopsy. (That's how they give bad news)...Abby continued to have a fever, continued to have neck pain during the night, and no one seemed to be able to figure it out...all of her bacterial cultures were negative...she was given codeine and morphine for the pain..but her counts were just not coming up, in fact her ANC dropped after coming up a touch...fifth disease was negative...It was nice to get all of these negative results but then what was it???? Let's just get the elephant out of the room; are we looking at a relapse here? Everything has been looking "viral" for almost a month now...so yesterday was it, bone marrow biopsy and spinal tap..this involved having the sedation team come in and describe all of the possible side effects, medications, and "reversal" medications in case Abby should have a reaction; all good stuff! Love signing the paperwork that I understand the possible side effects and complications...that feels really good..there's a 1 in a million chance that this could happen...but....The bone marrow biopsy was tough, Abby kept pushing away with her back and had tears in her eyes so they kept upping the medicine until she was completely sedated...very scary having her hooked up to all of these monitoring devices; her heart rate will slow down....About halfway through, Dr. Grossman looked at me and said, "Oh I forgot to ask you if you usually stay for these tests"..I just said, "I am barely dropping her off at birthday parties"...I cannot imagine that some parents let their kids do this alone...but it happens all the time...anyway, he assured me that he would get the results to us ASAP....and then the wait began....The test was finished at 11:00; we didn't get the news until close to 4...all was clear...Dr. Grossman came in the room and all he said was, "We are not going to the conference room"....I felt a huge release but was still so tightly wound, I began compulsively organizing the room. Those 5 hours were so intense and Abby didn't even have a clue...John was nervously pacing the halls, at one point came into the room sighing loudly. I said, "Do you have to make that noise?" and he said, "Well there's a lot of people that we know in the conference room"...He was reacting the way I had in November, searching the halls for any sign, any clue...I was much calmer for some reason...I felt in a way like I had never felt before, a defense mechanism I must have developed just for this situation...about a half hour before we got the news, I had this overwhelming good feeling; I felt like there was a reason this was happening now, as if God was somehow protecting me from all the anxiety that was building anticipating Sept/Oct when we have to wait again...having this now just thrown at us, allows me some reassurance that things are ok and are going to be okay...
Funny story...Audra got permission from her camp (she is a nurse at a summer camp in Franklin) to bring Caroline for the rest of the week. I was already on my way to the hospital to trade places with John and didn't anticipate Caroline going to camp so John had to stop on the way to meeting Audra and get Caroline some shoes and a bathing suit...Now, he's a very hands on Dad (has the high score for Dance Dance Revolution High School Musical Version) but I handle the clothes shopping. "Her shoes are size 11/12 and Small for a bathing suit" was what I told him...later I asked Audra how it went and she said, "Great, except the bathing suit was enormous! We had to tie the straps in several places to keep it on her". I asked John about it and he just smiled, so very pround of himself, "Yeah, wasn't it nice? Didn't I do a good job?"...I asked him what size he got and he said "11/12! Just like the shoe size...aren't the shoe size and clothing size the same? I wondered why the sales lady kept telling me to keep the tags on it and make sure it fit"....Classic father/daughter shopping
August 9, 2009
Shortly before bed last night, Abby's neck started to bother her again and she developed a fever 101.6. She was crying about the pain and I just still didn't know what to make of it; the nurse gave her tylenol which helped and Abby fell asleep. Her appetite was poor all day and her ANC was still very low....The night was just awful because I started to worry about her neck pain; it is just such an unusual symptom for her and her ANC has been down for 3 weeks!! She has never gone this long without chemo...I just felt like I didn't have any answers and really wasn't sure what the questions were. Abby woke up basically every 3 hours last night...her feet would start moving first and the she would just start to cry, my neck hurts, owie, i yi yi...she would get Tylenol and then cry to me, "how long until it works"...I lost track of it all by about 4 am when I think we both fell asleep...GD IV...beep beep beep beep...it's like shutting of a snooze alarm for the entire night! By this morning I was really worried and met with Dr. Goldman, Goodman, I can never get it right, which is strange because I really like him. He joined the Ped Oncology group in the past year and he took really good care of us when Abby had her acute belly pain stuff in April..anyway, he still explained a few scenarios...1) is that her bone marrow has just had it after all of the suppression and it is much harder for her body to bounce back, it is not unusual for this to happen at the end of treatment, 2)Your body produces a hormone (some long word) that stimulates production of white cells and sometimes this hormone is injected in persons who have chronic neutropenia...but there is often a fever when this process is happening naturally in the body so that is a good sign; 3) Her monocytes (these become neutrophils) are really high...so I felt much reassured after speaking with him...bacterial cultures from her port are negative so far...The plan was to see how she was tomorrow and if no change in blood work, bone marrow biopsy on Tuesday (deja vu)...Then Abby spiked a fever this afternoon just as I was about to leave...103! She got more Tylenol and cultures and I spoke to another doctor to find out if this type of spike in temperature was typical of the hormone production thingy and yes, it can be....so basically, some reassurance but still a lot of waiting and wondering...she's great though, putting Legos together (how boring but she loves it!!!) and we watched Finding Nemo together yesterday from start to finish without any interruptions (Yes, my first time and I absolutely loved it!!!) so let's hope for a better night and some answers tomorrow....
August 8, 2009
Abby had a pretty good week but developed a neck ache Thursday night. I didn't think too much of it because she was just really tired after much playing outside. But she didn't feel like eating supper and slept next to me (both are not typical for her)...I decided to take her for labs on Friday morning, just to check on things before the weekend; I didn't expect too much change but wanted to make sure she didn't need a transfusion and her that her neck ache wasn't some bizarre symptom of something weird. John said, "she probably just slept on it funny" and while I agreed that was likely, she is in fact a 7 year old who is neutropenic and anemic so who knows??? She played well again on Friday (her 6th trip to the lab in 3 weeks, never mind clinic) and intermittently complained about her neck but it didn't really prevent her from doing anything so I wasn't too worried...but then I got the call about her labs, it was a message and I didn't feel the need to call back. Her red cells were low but still okay, no need to worry about a transfusion for now but her ANC went down (now in the 100 range)...but still just thought we'll f/u on Monday at clinic...by 6:00, Abby was REALLY complaining about her neck and I was just baffled....is this just a neck ache or something to worry about??? I asked her a gazillion questions...how do you interpret a 7 year old's description? On a scale of 1 to 10, 10 being the WORST pain, like when they drew blood without EMLA, how badly does your neck hurt? "..."10" and "worse than the blood" were her responses...I think she was exagerating a bit but again, she's been a consistent and accurate reporter throughout this process and she had NEVER complained about neck pain before...she wanted some pain med but I didn't want to mask a fever in case so I took her temperature first and she was 100.6 (the cut off for ER is 101). Kerry was with me and I just shrugged my shoulders and asked for some advice...it didn't really matter because within 20 mins she was up at 101.7...Kerry quickly packed up Michael and Caroline and we were on our way...well, kind of...Michael had managed to get into my van earlier in the day and had left some lights on so of course now my car battery was dead. REALLY??? Are they up there just laughing, "hey let's f with her a little more?" So Dad to the rescue AGAIN, sorry to interupt your one summer visit with friends...did you want some time to yourself for just a bit?? Mom came with me and John met us at the ER...Dad jumped the car and drove it around a bit.
Short story long, we are in the hospital until Monday...no new news really, just IV antibiotics, chest x-ray is clear, neutropenic, sore neck...still looking viral, most likely her bone marrow has just HAD IT after almost 2 1/2 years...so we're hoping it bounces back up and she'lll go home on Monday, which would be a clinic visit anyway and the start of steroid week...
August 4, 2009
Thank god for ambien! I did manage to sleep last night thanks to Ambien! After I allowed myself to go through the emotional response I needed to and John and I punished ourselves by looking up everything we possibly could online (you really should lose all access to online information when you become a parent...our moms have something on us there!) we felt reassured a little (mostly because that's what we chose to hang on to) that it was fifth disease that was causing Abby's anemia...when you look at a set of symptoms for almost every virus, it is the same as leukemia. It is NOT reassuring to us at all when we hear that Abby's symptoms or labs are typical for relapse because her labs did not paint the typical picture for Leukemia in the beginning. Anyway, I felt a little better this morning; when we got there Abby had labs without EMLA!!! We only had 1 tegaderm left and picked the wrong arm (theys always seem to have trouble finding a vein); I was a mean, mean mom! I could have waited another 45 minutes for the EMLA to be applied to her to her other arm but I just didnt have it in me to wait. Waiting is over-rated! "Good things come to those who wait" Who made that up??? Forget about it, go for what you want when you want it!! So the doctor came in and had reviewed Abby's file for a couple of hours last night and felt pretty confident that it was a virus or the maybe even the Bactrum. He did not find it necessary to do a bone marrow biopsy and said that even if he did, he couldn't today because today was for Hemophilia. Oh, okay, glad I hit the panic button, glad I took a 12 hour day off from work, glad the Hemophilia patients are being seen today! I am being pretty sarcastic but completely honest. He explained everything very well but I was READY for the biopsy. I had gone through all of the emotional crap I needed to and was prepared mentally...Okay let's do it, cut a hole in her back and scrape her insides and test it, let me wait the 48 hours freaking out, I was READY! Bring it on! There should be a sigh of relief but I really don't think there ever will be and that's what we are realizing. This "saga" isn't just a 2 1/2 year "blip" that we can be rid of in October...we have to stop denying that and deal with it. So Abby's neutrophils came up a little (was 300, now is like 344 not a big deal in the world of neutropenia) and her crit went down...that is okay, though, because the effects of a transfusion is only a week or two so her body just isn't doing it itself now that the transfusions have done their job. She might need a little more help in that department. She didn't have any seds (those immature things to be very afraid of---Abby had 1 in November and when there are 2, it's extremely scary, when it gets to 3, it's bad)...he is going to look at her cells under the scope later today but < 50% of Leukemia is found that way and she will stay off her medicine. She will also be tested for a neutrophil antibody (where the neutrophils attack themselves) and for fifth disease. The neutrophil test takes a day or so, the fifth disease about a week..in either case, you don't do anything but wait, but at least we would know..so more waiting....she'll go back on Monday. Thanks for the prayers and kind thoughts...it means everything!
August 3, 2009
The craziest is going to start a little earlier than planned....We decided that I didn't need to miss yet another day of work so I brought Abby for labs today...my thought process was that her neutrophils would be rising and she would be fine and we wouldn't need to bring her to clinic tomorrow and I could go to work. Didn't work out that way...after a long day of waiting, we got the call just as I stepped into the shower...so John actually got the call; he didn't ask nearly as many questions as I would have because I had already had several specific Q&A sessions related to the possible scenerios...so all he got was that she is still neutropenic and now a little anemic as well and that they want to see her tomorrow. We should pack a breakfast but not give it to her in case we need to do a bone marrow biopsy. I went back into the shower and dropped to the ground; the pit in my stomach grew and I just felt like I had been belted in the stomach with a canonball. What I knew from the conversations I'd had with the NP, was that Abby's "other counts" were all good and that this seems to be only affecting her neutrophils and that isn't the usual picture for a relapse...usually other cells (like platelets) are low too. Knowing all of this made me jump to about a gazillion possibilities....I called back but wasn't able to get the NP; was going to overhead page the oncologist but then I just let it all go...what could I ask or find out tonight that would help me sleep better? Unless someone can reassure me that this is routine, common, and absolutely nothing to worry about, they better not tell me anything. This is the part that will drive me crazy. I'm already all over the map with my emotions and not my head just plain hurts. I want out of this club, resign my position...we'll see what happens tomorrow....pray its fifth disease, pray its fifth disease. Protect my baby...
August 1, 2009
Brought Abby back to Leominster Thursday night for labs, decided not to call and discuss all of the "what ifs?", plan A if B, if not B, than A, and so on and so on...those were my least favority math problems in school...if a car is headed north going 80 mph and a train is headed west at 120 mph, when will the car need its tires changed? Can a train really go that fast? Does the person in the car know any of the people in the train? You get the point...it's pointless. I didn't want to figure out all of the scenerios in my head so I opted to not become aware of them. Just need to wait for Friday's results....these came in late Friday afternoon and in the meantime, Abby had developed these very large red hot to touch cheeks and a very slight rash on her arms and legs. No fever and i emailed pictures to the NP at UMass; she felt it all (the whole picture) was very much painting the picture of a virus do in a way, it's a relief that she has a rash because it is a symptom of a virus and can help explain her low counts...apparently Meghan broke out with a similar rash yesterday and she was with a friend whose mother clearly though she had fifth's disease because her nephews had just gotten over it. So it fits and we are hoping that's all it is. Her labs did not improve on Friday; her ANC is the same so she will need to stay off all of her meds and go to UMASS on Tuesday so that she can have a physical exam and they can take labs again. Now we needed to get into the "scenerios"....If it is a virus we just need to wait and let it run its course and hope the neutrophils start to come up. They will test for a neutrophil antibody which is basically when the neutrophils attack themselves....apparently if this is it, we also wait it out. This is the part of it all that is hardest for me and scares me the most...the waiting, wondering, waiting, is this something to worry about? Because I am already worried about having to worry which is really worrisome. It doesn't look like a relapse (that word just scares the total bejeezes out of me) and it just gets thrown around like it has been a casual part of the conversation since the beginning of this whole deal. It hasn't...this is a word that I didn't invite into my word bank, I am fairly selective about my word choices and relapse didn't make the cut....so anyway, it doesn't look like a relapse because all of her other counts are good and if it were the Leukemia, we would expect more than just the neutrophils to be effected...and there are none of those add immature cells floating around. So more questions arise....of the children "like Abby", how many missed weeks of chemo? What were there chances? Did any of them relapse? I was told that they haven't found a correlation between those that relapse and those that missed doses of chemo. So this is probably just a normal childhood illness that is happening in an immunosuppressed child. So that's it for now....she'll go in on Tuesday and we'll keep praying for more neutrophils and no fever. I am going to go absolutely crazy over the next few months.
July 27, 2009
So I knew something wasn't quite right when I brought her to labs yesterday...she just seemed a little quiet and we took her temperature like a gazillion times...when your child has Leukemia and you think that they "might" have a fever, you can't be off by a few points...when she hits 101, we are going to the ER so when she's 100.3 or 100.5, you start to think about the convenience of it all...if it goes to 101 RIGHT now, then we can get there before we start falling asleep for the night...in some ways, you almost wish she'd go to 101 (but only if she's going to go there at some point); let's just get it over with. And then you repeatedly take a temperature, you try it on yourself, on other family members just to make sure it's working okay. We have purchased at least 6 thermometers during the past 2 years, never trusting any of them. So we avoided the dreaded ER trip yesterday...she only went up to 100.5 by the time we stopped taking it.
This morning we got the results from her labs and sure enough her ANC was down to 100; she is EXTREMELY neutropenic...I was like a zombie on the phone going through the motions, okay so what does this mean? Something about keeping her off the chemo for another week, it was likely post viral, and maybe a bone marrow biopsy...WHAT??? But I didn't even really bat an eye, just "mmhm" and "ok"...I listened a little longer, heard something like, "her platelets are normal and her red cells are normal, her monocytes are good (those become neutrophils), and there are no "immature" cells floating around (those are the things that can become blasts...back in November when we had to wait for one of those to disappear and it felt like an eternity)"...so her body is likely fighting a virus...LIKELY??? Could it be the bactrum? What do I do? Can someone just please promise me that this 2 1/2 year treatment plan will work? Promise me and guarantee it so I don't have to think? So the outcome (for now) is basically to wait and hope for neutrophils...we've said this prayer before...we need healthy neutrophils for Abby...no chemo and no bactrum and return to clinic on Friday....hopefully to find that her counts have returned to normal. She played nicely with her sister today and by the afternoon her cheeks were rosy, round, and hot to the touch...still no fever (well not over 100.3)...John and I were supposed to go to the Red Sox game tonight but opted out....didn't want to have to get out of Boston, home, and then to Worcester if needed....the girls were going to Auntie's and Michael to Mimi & Boppa...I took pictures of Abby's face and arms (which were a little red too) and emailed them to the NP at UMass...John and I at least went out for dinner which we never do and it was nice to have some time...of course, the underlying thought process for both of us was Abby...Auntie texted that she was fine and swimming and only 100.3. How does a sick little girl manage to swim??? A normal neutrophil count is 1500-8000...the body is really an amazing thing. So anyway got a message from UMass in the middle of dinner, looks like her rash is probably post viral; can call tomorrow and talk more about it and of course, go to the ER if her fever reaches 101....So I am about to sleep but half waiting for a call that it is time to take her to UMass. Pray for neutrophils, pray for neutrophils....
July 27, 2009
We made it! We got to Maine for our annual family weekend....we were quite certain we would end up in the hospital but a little angel was looking out for us and not only did we make it to Maine, we got to swim and play and Abby did it all!! She held her own with her siblings and cousins; she boogy boarded, jumped over waves, looked for crabs and lobsters, and swam in the pool until her veins were flowing with chlorine! She had an amazing time! Boy these kids don't need much...just some water and each other. It was nice to have some time with Mimi, & Boppa, Uncle Sean, Uncle Mike, & Auntie...not to mention my husband...my nephews are growing up so fast, it was nice to have a little time to sit and chat with them. I am so thankful for this weekend, it was much needed. We got home and unpacked and I brought Abby for labs again. I am waiting now for the results. She was walking the line for a fever all afternoon yesterday but never quite hit the 101 mark so we were safe....we'll see what happens.
On another note, my father, Mr. Patrick Murphy has been busy planning the 3rd annual Abby's Angels Golf Classic to be held on Friday, Sept. 11 at Townsend Ridge Country Club. Information will be posted on the "Fundraisers" section of the website in the next few days. Believe it or not, the date of the tournament is likely Abby's last day of treatment. Her last steroid dose, her last chemotherapy....
July 20, 2009
So we didn't end up establishing a plan until late Friday afternoon...the plan was basically to wait it out. Her crit (that was 23) had dropped to 21 (the level that they usually transfuse) but her retic count was something like 1.8 which was a possible sign that the levels might go up (the 1.8 measures immature red cells that will become mature red cells...when the number goes to 3)....red cells are produced slowly so in terms of clinical symptoms, I wouldn't really notice a huge improvement in Abby as far as energy and color...but I should watch for a decline (more lethargy, racing heart)...Abby stayed about the same all weekend, tired, didn't swim when Caroline and Meghan did so I went for more labs on Sunday...thank you sooo much Big Grandpa for the company!! Got THE phone call at 7:15 this am (wasn't expecting any calls until clinic opened at 8:30) so I knew something was up...her crit was down to 18 so it was a definite transfusion...good think Kerry was already on standby "in case" so I gave the kids breakfast and packed them all up...by the time we dropped Caroline and Michael off and got coffee (a MUST!! ), we didn't make it to clinic until about 10:00....they had difficulty accessing Abby's port and she was so upset, just tired and literally green; but we held her down (and she is strong!) and got the needle in after the 4th try and she was so relieved. They send her labs off for "type and cross" and we were given a pass to leave the grounds for 2 hours so we went to the Christmas Tree Shop and picked out some books and had some lunch and got another cup of coffee (a 2 cup day for sure!!)...We stretched our curfew a bit and made it back by 1...glad we didn't rush because she didn't end up getting her blood until 2:00...there were 2 other children there today and both had bad reactions to their platelets; now I understood why there is hesitation to transfuse. Even with all of the technology and screening of blood and blood donors, it is still tremendously risky and you never know what can happen or what was overlooked. Abby didn't get platelets today she got red cells and tolerated it well. Turns out she also had a little fluid in her ears and is neutropenic as well so we have to be careful. There was only enough time today for 1 unit of blood so Abby has to return for the other one tomorrow. They left her port accessed and she has this little chest turban to help keep it clean and safe. But one less poke is one less poke..poor thing has had her share of needles...she's champ; sleeping peacefully now. But she's pink again.
July 17, 2009
Michael emptied out my cabinet the other day by throwing canned goods as hard as he could down the stairs...bang, bang, bang! The good news is that now our floors have that rustic look we've been striving for! Glad he's cute..."look mama, I throw it, I throw it!"
Abby's clinic visit went really well on Monday; she was accessed very easily and tolerated her spinal tap without any difficulty. Her LAST one!!! Well, kind of...she will still need to have a bone marrow biopsy sometime in October after she's done with her treatment. Then we will have to wait 48 hours (the thought of it just stirs up all sorts of emotions) for the results....She will have 2 more clinic visits with chemo and 2 more seeks of steroids (August and September) and then she will be done! I cannot believe it. I had a long talk with Dr. Usmani on Monday, all about the plan of care and basically, I asked in as many ways as I could, for confirmation that we were, in fact. DONE...I knew that I could not and would not receive the guarantee that I so desperately want to know that Abby's Leukemia is not ever coming back..She is in the "90%" cure rate which sounds wonderful when you are diagnosed with cancer but I won't even have laser eye surgery because of the "1%" risk of blindness...I don't want a "10%" chance of ever having to endure the past 2 1/2 years again. Here's a sample of my line of questioning..."Of the 10% that do have a relapse, in what ways were they like Abby during the course of treatment? Is there a pattern in any certain variable that increases the likeliness? Were the "relapse" patients like Abby in ANY way??" Of course, there is no specific answer that can be given to me, only the knowledge that she has done well with her treatment and she hasn't needed many breaks from her chemo and she has gotten all of the tools that she could possibly need to fight this battle..that's all I have to go on...Dr. Usmani was wonderful in explaining to me that Abby has done well and has tolerated everything as best as can be expected and at this point has just as much chance (as any of us do) at having something else bad happen to us (her wording was much more charismatic) so I can't worry about this happening for the rest of my/her life but I do and I will and Dr. Usmani knows and understands that....What chance does she have at having secondary cancers? Her risk is so much higher so what do I do? Do I bring her to every cancer screening possible? Do I feed her grape seed, echinacea, and fish oil every day? Every time her color is a little "off" will I run to have lab work done?? What can I do to protect her? and me? These are the emotions I am going to have to sort through and learn to deal with...there is so much safety right now knowing that her bone marrow is suppressed and those little bugger blasts are being shot at before they even think about forming....
Abby's hemoglobin was very low on Monday but not quite low enough to require a transfusion. Dr. Usmani wants to avoid that as much as possible due to the risks associated with that...so Abby just hasn't been herself this week (her "steroid" self not her "self self") which has been a blessing in a way. She hasn't had the energy to cry or eat...so I brought her to Leominster for labs yesterday just to make sure and wouldn't you know it? It went down more so we are waiting for a call back to see if she needs to go in for a transfusion...it depends on her reticular count or something like that (the immature red cells that will be turning into red cells)...she is sleeping now (she NEVER sleeps in the afternoon and has every day this week)...poor little thing...
July 12, 2009
No news is good news?? Abby had her MRI on Monday and she did just great! She was in that tube for over an hour and 15 minutes!! I don't know any 7 year old that would have sat still for that long. I could barely tolerate just sitting there for that long. That's the one thing in all of this, you learn to be patient; something "simple" like having an MRI is just another thing to do, to deal with, to wait for...anyway, I was just so proud of her! We brought her High School Musical (her and Caroline play "Gabriela and Troy" of course, Caroline always gets to be Gabriela) CD and she just sang to herself for the entire time. We haven't gotten any results yet and I called once so I am assuming that there is nothing to be called about...we'll find out tomorrow, Abby's LAST spinal chemo!!!
We had such a perfect 4th weekend...simple, that's all it needs to be, simple. You don't need to drive far, spend a lot of money....we started off by going to the Pepperell parade which is just a lovely little parade, easy to drive to, get a good spot, and get out...and they throw a TON of candy! Drove through the old neighborhood, showed the girls where mommy grew up..then went to the lake for an amazing day with family...it was very quiet and the weather was perfect. Michael loved being in the water "Look mama I sflashing"..and I don't think Caroline and Meghan ever got out, running and jumping off the dock over and over again, "Us is coming! Us is coming!"...and Abby discovered her love of fishing (lucky me...guess Daddy will have a new activity to do with his daughter). It was just so nice because the lake has been such an issue with Abby not be able to go in. It's been hard to watch Meghan and Caroline have fun while Abby tries her best to make the most of it...but now she can fish with Matt. Glad we discovered this little tidbit with a few weeks of summer left before she gets her port removed...anyway, topped off the evening by sitting in the middle of the lake on the pontoon boat, watching fireworks..simple and perfect! I couldn't plan a better day...and Sunday was wonderful, too. We were all just home for the day, that's right all 5 of us; we are a family of 5. It seems like it has been mostly tag team parenting, 1 stays with Michael for his nap, the other takes the girls, 1 takes Michael home for bed, the other stays with the girls...1 works when the other is home, and vice versa...it's a balancing act for sure. That's what I always tell young married couples before they have children, make sure you like each other underneath it all because there will be a stretch of time when you barely see each other or have QT together, not talking about "house" stuff, how you're going to manage your children's behavior, make decisions about their health, drive them here and there, mow the lawn, rake the leaves, do the laundry, etc, etc, etc....make time for family as a whole unit, make time for individual family members, and make time for your wife/husband...well, see now I am ruining my "perfect" weekend by throwing in all of the "real" stuff that bogs us all down...so anyway, we were all just home on Sunday, had a wonderful family dinner, and we were able to just "be"...that's my new motivational tag phrase to keep myself in line....just "be" Kelley, just "be"....
July 2, 2009
Has it been almost a month? What ever happened to "April" showers??? If you weren't prone to depression before, this should do it!!! Abby turned 7 and Michael turned 2...where does the time go? I am having such a hard time dealing with the fact that the "baby" part of my life is over...I mean, I know that we are done for so many of the logical reasons (financial, age, space, etc, etc) and that 1 more might just push me right over the edge...but I cannot help feel sad that my baby turned 2. We've been watching home videos in the rain and it has been so much fun! We have NEVER watched them before, not even sure what we taped...it seems as though we were pretty good when we first got the camera (got it for my 30th birthday, along with a rocker glider and 3 months later, my first baby!) so there's quite a bit of the early years with Abby...I know I am biased but she was just a stunning little girl...golden curly locks and big blue eyes, rosy red cheeks...awkward physically and very talkative! It was weird to look back, realizing that we had no idea what was coming...anyway, she's doing well now, we had another rough week. I woke up in the middle of the night to her screaming in pain, banging her legs on the ground, helpless. If I could count how many times this scenerio has occurred and each time, it is as though it is the first time and I still don't know what to do. I say all kinds of things to myself in the night, like I am calling UMass tomorrow and I don't care what they have to give her, we are NOT having another night like this! Not 1 more time, I just can't do it. I cannot do this another 3 months, I just can't. Hasn't it been just "3 more months" forever???? Maybe not to others and from the outside it must just seem like, oh 3 months left? Wow, that flew, almost over. Nothing could be further from the truth. With the end of treatment comes a tremendous amount of fear; I cannot even believe I am writing about it, because I have pushed it so far to the back of my brain (the spot where I've put all of my feelings)...as I am writing I am realizing I just still cannot go there..it was a lot of effort to push those feelings away and I know I have to deal with them, but not yet. Anyway, I did call UMass and we were going to give her morphine but the doctor decided against it so we treated her around the clock with ibuprofen and tylenol with codeine. Some parents don't even let their kids have sugar...I pump mine with whatever works....feels good, feels good :(
But it seemed to have helped because she recovered pretty quickly from this week which is much improved over the last few clinic months. So she'll have her MRI Monday and I can only hope and pray that they don't find anything else for us to worry about. So, now she's feeling well and we are about to embark on my favorite holiday of the year...what fun are parades, sparklers, and watermelon in the rain???
June 14, 2009
So, 7 years and 1 day ago I sat in my hospital bed filled with the most powerful rush of adrenaline fueled by the completely raw overwhelming and powerful feeling of love for my new baby girl...a feeling I never new could exist inside a single person and I'll never forget is as long as I live. This beautiful teeny tiny little girl had grown inside my body and I didn't know what to expect. And now she's seven and I still don't know what to expect. I certainly didn't expect Leukemia. She is doing well, in a "normal" stage right now, going to school, to tee-ball, to brownies, and she has been feeling pretty good! She is so excited about her birthday! It's such a big deal at this age and I completely enjoy making a big deal of it too! Happy Birthday Baby!! I want you to know how much you have completely changed mine and Daddy's life! We know love that we never would have known without you! We love you so much! Enjoy your Birthday!
June 1, 2009
Well I just read my own update which I don't tend to but WOW! how very compLAINY (inside family joke) of me!! CompLAINE, CompLAINE, CompLAINE!!! And to think I have trying to teach me children NOT to complain but I guess they learn from example...Cherish, cherish, cherish...no matter how many lessons you get, you still have to LIVE IT (as the very lovely Mrs. Giancotti always says :)
So today, was a day at home to "cherish"...John and I have been like farmers, getting up early moving dirt, planting, trying to make something out of our never landscaped, bought in the winter, worked on the inside for the past 9 years house..and it still looks like we've barely touched it...it's getting there...Brought Abby for labs today and she did it like a champ, not a flinch or a squirm out of her, I don't even remember at this point why we were having them done halfway through clinic visits...isn't that sad? The good thing is that she is doing so much better, going to school, smiling, and playing.
I took Caroline for a hair cut today, trying to spend some Q-t time with her...put a little bounce back in her curl, not that she needs it. She doesn't walk anywhere, she bounces, skips, twirls...drives me crazy until I step back and realize just how much fun she's having. For a prize, they gave her a whistle...a 120 dB 8000 Hz (And I KNOW that for sure because I am an Audiologist) whistle...almost needed to have my windshield replaced...obviously it was an auntie who decided what to buy for prizes. After her haircut we went to clean out the van and I discovered what the only job is that could possibly be harder than being a mom---the person who has to empty the car wash vaccuums; the stuff that must be in those things! A combination of all of the worst possible things a mother has cleaned up at some point, blended together in one place....GROSS!! Michael (I know I know, "I TOLD YOU SO!!") ruined my cell phone today; he put it in the trash after he poured laundry detergent in the bag...my phone was soapy clean but could only work with text. So after labs, Abby and I stopped in at Verizon---Welcome to the New registry! That's what it felt like...stand in line for a half hour, only to be told you need to "log in" and then wait for your turn, then get a repair ticket and wait again...I can't compLAINE about it that much because they replaced my phone and I didn't have a warranty (if it wasn't bought at Best Buy, I didn't get a warranty). What did we do before cell phones??? I didn't have mine for a day and I was lost...and I don't even use it in my house...Dayna I cannot believe your children are all graduated! You "older" (and I say that in the most respectful and endearing way) moms teach me a lesson or two and I am thankful to have you all going through it first---your wisdom, guidance, and funny stories, make me realize how fast it all goes and you really do just need to cherish it all!
May 30, 2009
I feel like the Pied Piper only I am not blowing a flute and I am not trying to make anyone follow me, but sure enough, there they are....my 3 little kids after me for every moment of every day..."mama" "mama" "mama"...OMG!!! Seriously, why don't they just and play for a bit??? They want to fold laundry with me, cook with me, clean the garage with me, plant with me, etc, etc, etc...just a moment of "alone time" is all I"m asking for....Once they were able to peel themselves off of me, they began to play and began having a fantastic time. Meghan came over and the girls played in the sprinkler and in the kiddy pool. John worked hard on that pool pump....nothing ever runs smoothly...Abby feels much better, it had to be the yellow paint medicine and now we've changed off of it and back to dapsone. Hopefully, her good mood will continue. She is as swollen as can be and it is tough to see. Her belly and face are puffy; "cushoid" as they call it from the steroids. I still hate those little buggers!
My little Caroline is such a water bug! She could stay in the lake all day---it's so sad that Abby can't go in the lake because I would spend all day there, every day but it's just not fair to her. But so far this year, she's been a good egg. I can't wait for this whole thing to be over!
May 25, 2009
It's been a rough few weeks.....she just hasn't felt well and hasn't bouned back as well as usual from last month's steroids and vincristine. Last week was especially tough; it felt a little like it did in the beginning...she just cried and cried and was so uncomfortable. And I've somehow become very numb to it all, pushing my "real" feelings deep inside me; I just haven't dealt with it very well at all and I think I am afraid to. I am afraid of the whole thing...we've just been moving along, in our routine; Abby in and out of the hospital for "little" things and I've been doing okay...and I think I just learned to bottle up everything inside me to make it "routine" and that is just not a good thing....it's hard to have your child feeling sick and not be able to do anything about it...that's how I have felt the past few weeks. She has missed a ton of school, her body is swollen, and she has had aches and pains pretty much everywhere...many calls to the doctor's and we are trying some things like increasing acid reducer, lactaid, ibuprofen, and tylenol...I got to the point where I just really didn't know what more we could do...has her body just had enough and the cumulation of chemo and steroids? I honestly felt like there was no way I could do this for another 4 months, I just couldn't.....and then this weekend, she finally seemed to be herself again...we had a wonderful day at the lake to celebrate Matty's 10th!!! birthday....Abby was smiling and playing and just seemed to be feeling much better. I was so happy to see her like that! I just love her so much and think she is so brave and strong!
May 14, 2009
Does anyone else find those new Old Navy commercials a little disturbing??? Yes, I"ve been avoiding the old updating thing for a while...Abby has been a little better but I have chosen to pretty much block it all out because I don't know how else to deal with it. We stopped the yellow paint medicine for a few days and it seemed to help but her belly is still hard and hurts at night and sometimes during school. She has also had a headache; I am relieved that her appendix stuff was negative but I don't know if her "aches and pains" are a cumulation of all of her meds, if they are a sign of something else, or if she's just plain old tired and this is how it's manifesting itself. I am trying to log it, identify a pattern of some sort but can't seem to make any sense of it. She returns to clinic on Monday so we'll review it all then. I also found out that she does not end her treatment in August as I previously thought; it will be in mid-September (something about the way her last spinal day and when in the cycle it falls)..anyway, you would think another month wouldn't be a big deal but it's like telling a 9 month pregnant women that she has to wait another month to deliver and her belly is going to continue to grow.....so there we are..
On a good note, my little guy had an echocardiogram today and his heart murmur is "innocent" and "benign" and we don't need to follow-up anymore...whew! We were there for 3 hours! I entertained the heck out of that boy! He screamed through the EKG but was down right adorable during the echo...he kept pushing the stethoscope away, saying "Idoewanit" and "shoe"...can you believe he is going to be 2 next month????
WOW!
For Mother's Day, Abby wrote all about me, how I take care of her and buy; her pretty dresses and bathing suits and how I tell her how brave she is when she gets "netals"...I actually cried, it was so cute.
May 4, 2009
So Abby came home and still doesn't feel great...she's doing a little better but still has a regular tummy ache, headache, and is ravenous...I don't even know what to think anymore; will have to call tomorrow and see what's up. On Sunday I had to go to the ER to get a tick removed and I realized actually how brave Abby is because I was a complete baby...I used her EMLA cream and even having that applied made me cringe...but it worked and my back was nice and numb before the doctor gave me the lidocaine shot...I was terrified...all I could think about was Abby and how much she is poked and prodded...Caroline had her Kindergarten screening today and did just great...separated and participated like she'd been going there for years...I was practicing some of the questions with her and asked her what her "full name" was...she responded, "Caroline McCarthy"...of course, everything is better at Auntie's...cracked me right up...
May 1, 2009
Shortly after writing my last update, I decided to take Abby to clinic...she just wasn't getting better and I didn't know why so I thought I should take her in..did NOT want to end up in the ER...so we took off to UMass and Dr. Grossman (a new pedi oncologist there---very nice!) examined Abby and decided to order a KUB (abdominal x-ray)...so we went to radiology and waited our turn...the x-ray was pretty quick and by the time we got back to clinic, they had decided that she needed an abdominal ultrasound...they had consulted with the surgeons and due to Abby's belly tenderness and some recent "funky" (my word, not theirs) cases of appendicitis with other Leukemia kids, she should have it checked out. The ultrasound was long and intense...Abby was starving and there were 6 people in the room watching, including the surgeon. I wasn't sure if that was routine or that they were all just getting to see an "interesting case". So that only made me more nervous...I know how it is on Grey's Anatomy (which, by the way is very real...all tv is) the surgeons love to get their hands an a good case so I thought that maybe Abby had some fascinating, interesting, medical thing going on. The surgeon was wonderful with Abby and had a fantastic bedside manner...I don't mean to poke fun at him; just to express my thought process when you have a surgical team watching your child's ultrasound it makes you a little nervous. So they decided to keep her NPO just in case she needed surgery in the middle of the night...easier said than done. My poor baby was sooo hungry and thirsty and now I had to be the one to tell her that she couldn't have anything. She cried and cried and it was so hard...she was also tired and didn't feel well. She calmed down and I gave her a nice shower before they hooked up her IV. She fell asleep by about 9 and she had a great night. Her belly pain appears gone this am (maybe she just needed a break from eating!) and does not need surgery! Yeah!!! So we've ruled some things out and let's just hope it's smooth sailing from here on!
April 30, 2009
I haven't updated because I've kind of in a funny place with all of this...very hard to explain, even to myself. Abby had a really tough week last week and it continued this week. I haven't been very patient, in fact, I've found myself quite angry. And that's a feeling I really haven't experienced much during this entire process. I'm just "done" with the whole thing...I know we are close to the end and things have gotten much easier but even though the "routine" has gotten easier, many other aspects have gotten harder. I am so tired of the whole thing...I don't want to see her feeling sick anymore, I don't want to watch her eat ravenously, I want HER hair back, not this thin, fuzzy, gross stuff. I don't want to worry about fevers and liver function; I don't want to give my 6 year old "sippy cups" because she doesn't feel well, I don't want to hear whining, I don't want her belly to ache, I don't want her head to hurt, I don't want to deal with Caroline dealing with all of the attention Abby gets, I am fried, tired, and Yes, I guess I can say I am angry. Not at anyone or anything; it's just this shortness in me, this frustration that seems to be coming out in every aspect of my daily functioning...
Abby is acting this week like she is still on the steroids...as I am typing, she is crying on the couch and I don't know why...I don't even know how to figure out why. I've called the doctors, I can bring her in, but for what? I don't even know and I am so frustrated that she feels this way and I don't know why. It took me almost 2 years to "know" Leukemia Abby and now I feel like I am back at square 1. Why does she feel so yucky? They were guessing maybe she had a little leak of her spinal fluid from her test last week but that's almost 2 weeks ago now so that can't be it....she could have gastritis but I've given her medicine for that and it doesn't seem to change anything...she doesn't have a fever (although it was starting when I picked her up from school today but never quite got there--great, maybe tonight)...She still eats and drinks..I just don't know what to do to help her so I am ignoring it...which only makes it about 10 million times worse....she's peeing, she's pooping...but continues to complain that her belly hurts. She's fine for a bit, tolerates a bit of school, a bit of little league, a bit of ballet, and then cycles back in to this belly pain thing...at the beginning of the week it was her hips and they thought that might be due to her coming off the steroids and the vincristine she got last Monday...but the hip pain seems to have subsided...so here I am, "done"; just plain "done"....
April 21, 2009
She's having a tough week..clinic went well...they were able to access her port easily and her spinal went smoothly...she was NPO until 1:OO and didn't say boo about it...I remember how hard that was in the beginning...her labs look good overall and she'll stay on 100% of her chemotherapy for the next month. The only issue is that her liver fx started to go back up again, not as high and not as alarming but enough to watch and enough to change on of her medications. She has to have it in liquid form (this freaks her out...she can swallow 11 pills at a time but put a spoonful of liquid in front of her and you may as well be pulling her limbs off)..the liquid looks like bright yellow paint, thick and neon. So that's been tough but it will be easier. She's just not feeling well, went to bed at 5 tonight, pretty tired, pretty cranky, and just wanting to be with me at my side. And I like having her there. In some strange way I'll miss going to clinic..that time with my daughter is sad and thought evoking but it is also very special...maybe instead of clinic, we'll take one Monday a month and go to lunch at the pickity place or take turns picking someplace...create our own "clinic" but we'll have to give it a jazzier name...any suggestions??
April 18, 2009
Our 2 year anniversary ("D-Day") came and went....it gets easier and easier...but also harder and harder....I've learned to suppress a lot of emotion to get through these past 2 years and with that strategy has come feelings of guilt and also my making bigger deals about other stuff...it's all very strange how it comes full circle...you are always growing and changing as a person, even though I believe that the core of who you really are in always there inside you. It comes out in different ways and is shaped and molded by your experiences. Sometimes I just get so tired of the self-analyzation, self-reflection, rationalization but I know that without all of that, I wouldn't have grown. It's amazing the confidence that comes from motherhood and life's experiences...you always see these 30/40 somethings talking about how they get better and better with age and when you are younger you think, are they kidding?? But I am now understanding what they are talking about. It feels good, no GREAT to be a mother of 3 approaching (slowly by surely!) 40!! I feel so blessed and grateful to be at this place in my life...now if I could just lose the weight and feel as good on the outside as I do on the inside...
The girls started tee ball this week and they are loving it...Abby was calling it "Italy" and I just couldn't figure out why. I heard her saying to Caroline, "Car, we are going to Italy tonight...we need to get our stuff ready for Italy"...at first, I was really excited, maybe John was going to surprise me with a trip...but then I realized that she had been hearing my call it "Little League" and she thought I was saying "Italy". Maybe she needs an Audiologist...I wonder where I could find one of those??? Probably the same place I could find Michael's speech therapist. He went from single words to complete sentences in like a day but you cannot understand a word he says...except, "shoe, mama, shoe, mama". And he doesn't mean footwear...he means, shoe, leave me alone...he even waves me away with his little hand, "shoe, mama, shoe"...
It's amazing how your perception of time changes through the years, too. I remember being in high school waiting a half hour for a class to end, thinking it was the longest time in the world...I remember keeping a checklist on the back of my door in grad school, literally, "x" ing out the days until classes were done...getting on the treadmill for 30-minutes seemed like an eternity...now a half hour alone on a treadmill would be like heaven...30-minutes is barely enough time to pack 2 lunch boxes, put some hair in pony tails, throw some diapers into a diaper bag, and buckle your kids up in the car...2 years ago, 2 1/2 years seemed like forever, 9 months of pregnancy may as well have been 10 years....Abby's 3 months of "intensified consolidation" therapy felt like 30 years...now she has 4 months to go and it seems like nothing....as her "due date" nears, I am thankful and excited...excited to give her body a rest, let her belly relax, see what color and texture her hair really is...stop trips to the pharmacy, BURN that little pink medicine bag.....but there is also a little fear about the unknown...we have felt safe once we passed the "hard" part, safe in the knowledge that her Leukemia shouldn't come back while she's on chemo...but what happens when she stops...will those cells and the codes that determine which ones mutate know that they can't do that anymore?? Will the good guys have won the war? What will be the aftermath? Will Abby's bones grow strong and healthy? Will her reproductive system be okay? Will she have learning or memory difficulties? These are the thoughts buried deep in my mind that I only allow to come out for very brief fleeting moments...I know that I will have to have my moment again when I allow myself to really feel all that has happened and face my fears and let all of those emotions out because it is important to get them out, but I am not ready yet and will stay in my safe place for now, enjoying the little things of each day, making these moments exist at the forefront...because ultimately, that is what life is all about....
April 12, 2009
HAPPY EASTER!! What a nice day! Auntie threw a brunch together and we had a lovely morning! And then, we were all just home all day, just us, like one big, happy family! John took the girls to the movies and I got a little study time. It was good down time, given the crazy time that was last week. My little precocious baby got into some medicine. I was taking a shower in the morning and the girls decided to take Michael out of his crib. When I came downstairs, I found him at the breakfast bar with capsules spit out and granules on the seat and on his tongue. I scooped him up and basically ran his face under the water and grabbed the phone. It was truly the first "panic" I'd ever had as a mom. I knew Audra was working so I called her and the doctor called poison control. Sure enough, we had to bring him to the ER. Audra and her friends took really good care of my baby, who basically turned into another child the entire time he was there. He had to drink charcoal and be under observation for 6 hours. He let them attach electrodes to his chest and he sat in that hospital bed for 6 hours! He never tried to climb out or anything!! I still don't believe it. It's nice that my family is used to the whole hospital thing because we all took shifts. Thanks Big Grandpa and Mimi AGAIN!!! My dad spent 3 days at hospitals with my children last week. I remember when I thought, "Why do people make such a big deal out of a co-pay?...I mean, you don't have to pay it that much"....see these are the comments and thoughts that get you into trouble....
I am relieved that Michael is okay and thought for sure we'd be reported to social services. I am usually so good about medicines, especially with all of the toxic things Abby has in her little pink enticing medicine bag....I don't know how that "17 & counting" mother does it...seriously, I can barely take care of my 3. So, needless to say I am still wiping charcoal poops...could there be a better lesson? No matter how safe you think they are, there's always something...
April 9, 2009
Big Grandpa (who is "just" about back to himself) took Abby to UMass for labs on Monday and wouldn't you know it, they made a mistake with the lab slip so it was all for nothing...we didn't find out until the afternoon that they only got her white cell count and didn't do any of the liver function tests that we were waiting on...So, Big Grandpa took her AGAIN on Wed...have I ever mentioned what a good guy he is??? So perhaps the wait was a good thing because her liver level that they were looking at was now only 3X the normal amount, which for Abby is very good...so she can continue to chemotherapy and resume the Dapsone and we are back into our "normal" maintenance routine!! Yeah!! So smooth sailing until Monday, the 20th when she goes for her spinal methotrexate (I think her second to last one!!!)
April 3, 2009
When did April get here? I didn't even play any April fool's jokes....I'm not really that funny anyway...although I love the shrink wrapping the car thing...when John and I went away on a trip once (when we were young and childless and able to enjoy such luxuries) we left his car at his work and we came back and the entire thing was filled with that foam filled stuff and the outside was shrink wrapped...it was hilarious...in college Audra drove a Yugo (it was literally a clown car), it used to get "lifted" at night so it would be parked horizontally in the parking space....ah, the good old days :)
Caroline and Michael are on the mend..."just" runny noses are now a blessing...Abby finally went to school today and is feeling well but her liver fx is still high, it's 20x the "normal" amount..so she has to go back on Monday for more tests and might have to stop chemotherapy for a bit...it's a lose/lose situation...either she takes the toxic medications that kills Leukemia cells and her body suffers in other ways or she doesn't take the medicines and the Leukemia cells multiply like rabbits...it's funny now, not "ha ha" funny but funny just the same, the "rabbit" analogy was one of the first things I read about Leukemia...it was a book designed for the middle school/high school population but it describe the whole Leukemia process in basic terms and analogies but it made me understand why she was having so much knee pain in the beginning...if you had 1 rabbit in your living room, it would be okay, wouldn't bother you much...but then that rabbit stayed and multiplied and multiplied and pretty soon, the walls of your living room are bulging and there is no room for you on the sofa...that's how Leukemia cells grow...I hadn't thought about that in a while..haven't thought much about the grand scope of it all in a while...it's better for me that way...
Wow off on a tangent...
March 31, 2009
Abby went to clinic on Monday and they accessed her port right away no problem...God bless Joan! Abby got IV antibiotics and they were able to draw labs from her port site. She was diagnosed with a UTI and her liver levels were elevated so one of her meds is going to be stopped for the week. She stayed home today with John and Michael and Caroline both have fevers (at least we can assume it's viral???) My mind just goes crazy at night and then in the morning, you realize how irrational my thought processes are at night. I was so fearful that Michael and Abby's fevers would get so high that they would have seizures so I made Abby sleep right next to me so I could feel her seizure if she had one...With Michael, I picked him up every few hours and kept the monitor on HIGH directly next to me ear...Woke up and everyone is just fine...but boy your mind sure does wander...
Abby spiked a fever in the afternoon so we will be taking her back to clinic tomorrow...I am going upstairs right now to take Caroline's temperature because she is as hot as can be and she's NEVER sick...so anyway, good night, sweet dreams...
March 29, 2009
It was a hard week for Abby...clinic went well on Monday (My 37th Birthday, what a gift!)but she didn't feel very well all week and missed quite a bit of school. She ended up with a fever early this am and had to go to the ER...it was just a bad day there for her...they were unable to access her port after many attempts and the area became pretty inflammed and sore. They had to use a peripheral IV instead but that caused problems for Abby as well so she needed to get a shot in her thigh and by that point, she had "had it"...the poor thing, these ER visits just set her back. I don't know how she trusts anyone, I really don't. It is so hard when she looks at me through her tears, with that look, like "help me mommy" and all I can say is, "it's ok, baby, you need to have this medicine"...I've become quit desensitized which has it's good and bad points. I need to make it all seem routine and not look at it for what it really is...so anyway, she's home but still has a fever so we'll go back to clinic tomorrow so they can try her port again.
On a good note, Caroline had a magical birthday. I wanted to make a big deal of it this year; I feel like she's been in the middle of everything between Abby's illness and Michael's birth, she is more of a middle child than she should be. It was her turn to have everything be all about her and make it special. She had a beautiful tea party with hats and white gloves; the works...she just loves to dress pretty, even though she's a tomboy at heart. She'll be the ball player on the field in a tutu. I tell her that she was my gift from god that I received on my 32nd birthday and it was the best present ever! And it keeps on giving! I can't believe that she is 5!!! I will be sending my baby girl off to Kindergarten next year. My how time flies!!
March 13, 2009
I think this has been my biggest slack so far! I was just enjoying the "smoothness" of everything, I think...my Dad came home last Friday and is SLOWLY recovering...WOW! this thing just hit him hard...It's amazing how easy it would be to let all of the "crap" (for lack of a better word) get you down...the weather, illness, the economy...I mean you name it, it's a pretty depressing world...it would be so easy to just shut down and worry, worry, live in fear, it really would be...everywhere you turn it seems there is bad news, hospitals laying off, schools closing, people losing jobs, people being diagnosed with cancer, I mean, really, you could just let it all get to you...what makes us see the good and happy in the world? I don't know the answer to that question and I don't know why or how any of us manage to smile and laugh...it's pretty sad out there...I think that maybe for every 1 bad thing, you can think of at least 5 good things that come from it...let's try it:
1. Dad goes in to the hospital with a horrible cellulitis...
Here's the 5 good things, let's see if I can do it: 1. Sean is lucky to live in Connecticut (just kidding Dad!) 2. We had an extra car to use while ours was being repaired; 3. We cleaned out our garage just a little to find Grandpa Lou's old walker; 4. Michael gets to take a few rides in a wheelchair; 5. Abby gets to see someone else with an IV sticking out of their arm...see that wasn't so bad, there really IS good in everything...Okay, that was kind of hard, but I am trying here!
Abby is doing well right now...shhhh! I signed Caroline up for Kindergarten and boy, good luck to her teacher...she just asks sooo many questions I cannot answer...today she asked me where you go when you die. Hmmm, how do I explain it? Not even sure exactly what I think myself but I try the typical parental route..."Your body goes into the ground and your heart and soul go to heaven with God". Not good enough..."And then you turn into a stone?"..(What is she talking about??? Oh, yeah, the cemetery headstone)...so I tell her, "No, we put the stone there so we will know where the body is buried"...."So God takes us in heaven and makes us into a stone?"...(oh dear, I just can't even explain it)..."Yes, God makes us into a stone"...Sweet dreams tonight Caroline, sweet dreams...I have absolutely no idea why she still wakes up every night crying and climbs into bed with me, no idea at all. I mean, I only fill her head with pretty, happy, colorful thoughts, so it can't possibly be anything I'm doing or saying to her...must be getting it all from her father...yeah, that's it....
March 1, 2009
Long week of steroids...she started strong, made it through school on Tuesday and Wednesday but crashed at the end of the week and needed to stay home. She was very cranky, very tired, and very hungry. I know she can't help it, but the whining just goes right through me...6 months left!!!!!!!!
My little boy has the cutest haircut in the world! Thank you Mrs. Mola! I can't even stand it to look at him; he's so gosh darn cute! He's a lot of work, this one...or maybe I just started to get a little comfortable as the girls were just that much older when he was born...I went to change him into his pj's for bed and I pulled a dollar out of his pocket! Now where did he get that? I told him to go and get more :) He has a routine of the things that he needs to "get done" each day..he unplugs the upstairs tv, shuts off the dishwasher, moves a side table out of the way so he can look out the window, and puts on his coat...he will wear that coat around the house all day...."coat" "coat"....
My dad came home on Tuesday and was re-admitted on Friday...his leg just wasn't getting any better and he was in so much pain. The visiting nurse took one look at it and told him he needed to go get IV antibiotics...by the second day of that, he had a follow-up with his doctor and his doctor admitted him to Clinton Hospital...he seems to be doing a bit better now so we are hoping that all will be well and he'll come home tomorrow. If it doesn't progress the way it should, they may ship him to Boston or UMass...it is hard to see him so miserable because he's such a happy guy. It's no fun to be sick, no matter what your attitude is...
February 23, 2009
Back to clinic today and all I can think about is another little girl with cancer who is having major surgery today. Why does this have to happen? I know these are not the questions that should be asked but you just can't help it...I have prayed and prayed for this little girl like she was my own and can only believe that the strength in faith and hope in all things positive will make a difference...it just has to...dig deep for this one, dig deep...
My Dad is still in the hospital; everything really "bad" has been ruled out...he is just fighting an awful infection...should go home tomorrow and will need a lot of time to heal...sometimes that's easier in your own space...
Enough of the damn hospitals already...let's go to the circus, amusement parks, beaches, backyards...move these dark clouds away and let there be sunshine!! I blame the groundhog...I need a scapegoat and there it is...it's the groundhog's fault for EVERYTHING!!!
So pray for HEALTH for anyone and everyone, but most importantly, spend a moment or two and concentrate your efforts on a little girl named Olivia...pray that she fights her little tooshy off and that she is safe.
February 20, 2009
Has it been almost a week already??? Another long week...he'll probably kill me for writing about this but my dad is in the hospital...he went in late Tuesday night (given excellent care by a fabulous ER nurse---thank you Audra)with a high fever and lots of leg pain...it's cellulitis and he is on antibiotics...just starting to feel a little better today; they did a bone scan and are checking for a possible infection in the bone, maybe were he had his ankle surgery a few years ago...sooo scary; ENOUGH of the hospitals already!! And I might become a nurse??? What is wrong with me??? I should be trying to work as far away from a hospital as possible...like maybe a flower shop (no, they send flowers to sick people)...maybe my dream store...a beautiful little shop that only sells "pretty" things...I have the vision in my head...
Anyway, Abby is doing much better; went to both "make-up" days of school this week...she has clinic on Monday and we will begin another week of steroids...no rest...but one step closer to the end of those blasted little pills!
February 14, 2009
Happy Valentine's Day!! It was much more fun in high school...when everything was egocentric....I have a quick cute story that those who know Abby will appreciate...(my little rule follower)...last night she was taking her shower and shampooing and conditioning her hair, I went up to check on her and I heard her counting aloud...45, 46, 47, 48...I smiled as I remembered that the first time I put conditioner in her hair I told her that she needed to leave it in for 60 seconds....that's my girl...it's just like the time in the summer when she whispered that she had to go to the bathroom...we were at the beach so I told her (and pointed to a spot on her thigh) to go "this deep" into the water and just stand there and pee...don't crouch or make it look like you are peeing...I watched as she walked into the water, keeping her finger on the exact spot that I had pointed to...she would stop every few paces "to measure", never moving her hand from that spot...I just know she'll have some sort of OCD or anxiety disorder when she gets older...but I'll take it, I'll take it!
February 13, 2009
Ahhh...all is right again...my 3 babies at home where they belong...Abby came home this evening...she'll just need to rest and have a follow-up with her pediatrician in a few days and then will go back to clinic on the 23rd as usual...she's taking a warm shower now (get rid of that bed head hospital sweat smell...you KNOW what I'm talking about)...and then we'll all climb in my bed and watch a movie together and snuggle...it's nice...
February 11, 2009
Things are about the same...she had a fever this morning and was given Tylenol and then didn't have a fever all day...until about 4ish and then she spiked another high one...they keep thinking it's viral and just needs to run it's course but were hoping after 3 days that the fever would go away...she had another chest x-ray and it looked a little better and her lungs are "moving air" better...her oxygen is down a little bit for periods throughout the day...she just seems so little when she's in the hospital...I just love her so much and want her to be home...last night, Mimi stayed with her at the hospital and John and I were at home...we tucked Michael and Caroline in and it just didn't seem right...she should have been there with us...it's so hard to divide the time, I feel bad when I'm away from her, bad when I'm at work, and bad when I'm away from the others...when I'm with her in the hospital, I can see that she's being monitored and well cared for and I feel okay, but the minute I drive away, my mind just goes crazy...
February 10, 2009
She continues to have a fever; was 104 this evening and went down to 102 before I left the hospital. She still needs her oxygen...she is beginning to cough quite a bit...she'll stay in the hospital until she is afebrile for 24 hours. She is still getting her chemotherapy because her counts are good so that's a positive thing. They think it's a viral pneumonia and as of now, aren't doing much else, other than giving her antibiotics and oxygen..we'll see what happens tomorrow, maybe she'll have another chest x-ray.
February 9, 2009
She DOES have pneumonia...they were going to do a CT scan but decided not to once the radiologist read the x-ray and confirmed a right middle lobe pneumonia...so she will get IV and oral antibiotics and blood cultures, the works. Right now she still has a fever (was 104 this afternoon and down to 102 after some Tylenol)..but she feels okay; just watching her oxygen and making sure she has all of the necessary precautions.
February 9, 2009
Just a quick update...Abby was admitted to the hospital late last night. She has a high fever but so far her chest x-ray is negative. They decided to keep her because her O2 sats drop without oxygen...they are talking about a CT scan to make sure they aren't missing anything in the chest...will know more today...
February 8, 2009
I am really getting tired of the cold but as long as everything was frozen, nothing could leak...our garage is leaking, our bedroom is leaking...does anyone want to buy a house? Ah, the life of a homeowner...it's almost as hard as being a parent. Abby is doing well, except for the ashy color of her face (will check that out again next clinic visit)...the girls are sooo excited about making their Valentines...Caroline sat at the table before school and wrote her name in a tiny little space 30 times...she just loved it; she is sooo ready to go to Kindergarten, bored out of her mind...where did the time go? In a few short weeks, I'll be registering her for Kindergarten...the past couple of years have been the hardest on her in so many ways; she hasn't gotten the best of me for sure...she will though, she will and I am trying every day to be the best that I can be. She lost another tooth yesterday...the tooth fairy didn't know until this morning...she was out with her friends and never checked her tooth log (the secretary never called it in!) so that tooth fairy is just in need of some time off without pay...slacker, that tooth fairy, she's a slacker!
Michael has turned a corner with his talking, thank the lord!! Another day of screeching and I would have just lost my mind! Now, it's "mon mom, mon mom" (c'mon mom, c'mon mom) and he pushes me off my chair with his little hands and makes sure that I am following him...soooo soooo cute...I love when he gets his shoes and socks and turns backwards to sit on my lap...this age is just adorable! Except I think he's going to be a little hoarder for the rest of his life...aside from the hiding spots he used to have, he now misplaces my shoes..he tries them on and walks around the house in them; inevitably there is one missing whenever I go to leave the house...
This week has been for connecting and re-connecting with friends...Kim B, it was just delightful to sit and talk with you! You make me laugh! Gwyn, those little babies are just adorable and your family is precious...it's just like no time has passed...and Kourtney and Julie, I can't wait to meet your new little ones!! And glad it's you and not me...I think I can say that for sure now :)
January 29, 2009
Wow I have been slacking here....Michael ended up with an ear infection and (of course) turned the corner all around the after going to the doctor's...it's like they have some sort of magic doorway over there...as a mom, you go back and forth, should I call, should I bring him? Is this just "what's going around? Is it just a virus?? And the day after you take them, they are fine...could have probably avoided the $25 co-pay and yet ANOTHER prescription...oh well, timing is everything...so aside from the screeching as his sole way of communicating, he is just fine!
Abby went to clinic on Monday for her 3rd to last (And I am counting on that!!! I don't like to ever think or talk about it, but I don't know what I would ever do if there was a relapse---can't even think about it---it's NOT going to happen). There was some sort of mix-up with her appt. (apparently it never made it into the computer) so on a day that she had to stay NPO, her procedure wasn't done until after noon! And she didn't complain once, not one "I'm hungry"...really amazing...she tolerated her spinal tap without any difficulties, she feels the initial needle going into her back but doesn't remember it and basically relaxes in the fetal position while the child life specialist reads books to her...and I just get to sit by her head and rub her hair..her HAIR...oh how nice it is to rub her hair....her labs were good but I had them run a test for the metahemoglobioanemia because her coloring is still pretty gray...that came out a little high so the doctor thought it would be ok but wanted to make sure her O2 sats did not drop during the spinal tap...they did a little but not too bad so for now, we are going to give it another month...it's such a hard thing...if my daughter never had Leukemia and was just taking this medicine that made her skin gray and affected her oxygenation in her blood, I would not give it to her...but with the cost/benefit as it relates to her overall treatment program, I'd rather keep her on this medicine for a bit longer. The next alternative is to go another med, one that is just that much less effective in preventing pneumocystitis...if she hadn't gotten sick in Nov/Dec, I would probably not even worry about pneumocystitis; I really just thought of that part of this as just a really cautious precaution now I am scared for her to get sick at all...let's just get through this "sick" season and sail smoothly into August for the event of my lifetime...
So she's not feeling well this week, very emotional steroidy (Yes, that is a new adjective and I submitted it to Webster's---there ought to be a separate "mother's" dictionary for the words we create that can only describe some of the thing we witness with our kids)...
January 23, 2009
Whatever happened to just putting a movie in and pressing "play" and actually getting the movie???? Very frustrated here, had to call John at work 3 times!!! to get a movie to play for Caroline...and I've already had the inservice....first, you need to find the correct remote control...which sounds easy but when you have 5-6 to choose from, and most of them don't have batteries because Michael has them stashed in his secret hiding spot, it makes it much more difficult...oh, yeah, we had a "universal" remote once...that was nice, whatever happened to that?? Once you find the correct remote, you need to make sure you have the correct disk, because, now, not only do you get the movie, you get all of the "bonus" material...yes, I need to see the trailors, interviews with the cast, the "making" of the movie, director cuts...please, show me more...ugh!! Then you FINALLY get the right disk in, the tv set to the right viewing menu, and then the disk just stops whenever it wants because of tiny little scratches that the machine is sooo sensitive to...what ever happened to just turning the "tracking" button a touch? Yes, life is easier...technology continues to make life easier...all of the little security devices, like when your car decides to lock itself with the keys in the ignition, what is that protecting me from again? Myself, driving to where I need to go in a timely fashion...right, that is soo dangerous...or when your toaster decides that the toast is done and no matter how many times you press it down to get it a little darker, it pops back up and refuses to let you....you need 26 different passwords to punch in at work, high security making sure you punch in....a little frustrated, a little frustrated....don't sweat the small stuff Kelley, don't sweat the small stuff....
We were very sick at our house this week, it started with John, who could have earned an Oscar for his performance...I think once you have kids, you lose that "girlfriend" doting mentality and basically just want to say "suck it up"...before marriage and kids, I would have laid down next to him and rubbed his head and made homemade chicken soup...now I just taped the door shut and made sure he kept his germs in isolation...didn't work because I got it next (now I bet if I had been more of a girlfriend and less of a wife the germs would have moved on past me)...missed work Tuesday, bounced back Wed, sick again Thursday...picked Caroline up at preschool on Tuesday and she was laying down in the treehouse...so she came to bed with me for the afternoon...it was nice to snuggle with her; we don't get that much "alone" time...so even "sick alone time" is good...Michael is still working his out, he's had a fever and a really yucky cough, hoping he doesn't develop pneumonia...so the silver lining, Abby is the ONLY one who hasn't gotten sick!! Which is really amazing because even Michael associates the thermometer with "Abby"...he carries it to her...so I will cross my fingers and pray that she avoids it...she has her spinal tap on Monday and steroids next week so it's really important that she stays healthy....
January 18, 2009
It's time to update the photos again, I'll get working on it. Abby had labs earlier this week and everything is good! She is due for her spinal tap next clinic appointment coming up in 2 weeks....hopefully everything will stay good and she'll go back up to 100% chemotherapy; it would be nice if she could stay at 100% for the rest of her treatment, gets some padding on killing those leukemia cells...Nancy sent me an article about the use of Grape Seed Extract in killing Leukemia cells...there was a study at the University of Kentucky that used human stem cells and it found that the grape seed extract killed a very high amount of Leumemia cells, without killing non-leukemia cells like chemotherapy does. Of course, there hasn't been anything conclusive or much more information but the grape seed extract is considered like 70% higher in antioxidants than the blueberry...Now I would never sway from Abby's treatment and I am definitely a "medical approach" believer but at what point to do start to believe and use alternative methods? Like children with Autism and ADHD, being treated with dietary changes...things like that? Wouldn't you try ANYTHING to make sure your child was safe and function like a normal human being? So I wonder if the grape see extract can't hurt her, why wouldn't I just give it to her when she's done treatment? Along with calcium and echinacea? I mean, who do you ask about these things? The doctor's will pretty much roll their eyes about alternative stuff (well maybe not in your face but that's basically the reaction), and the "alternative folks" will of course, support anything "natural"...which I don't know how anything is really "natural" anymore...well, just some food for thought...
I haven't really given much thought to the end, other than wanting to have a big party. John and I will be reaching our 10 year anniversary and had always planned on taking a trip, a second honeymoon, but I think we'd rather have a party to celebrate the end of treatment. It's coming fast and it all just seems like a dream/nightmare sequence..Abby's doing terrific, loves school...she just started basketball and it's quite comical..the league that she's in just throws the kids into games from the beginning, so she is pretty clueless...but she skips down the court as happy as can be and it is good exercise. She's already asking to play next season so that's a good sign.
Ready for spring???? I am not a snowbird, but don't know what I would do without the seasons.
January 8, 2009
No news is good news, right?? Very status quo..it's nice...Abby and Caroline are back at school and I am increasing my work load...getting organized and it just feels good! Abby has about 8 months to go with her treatment; that's less than a pregnancy and I am hoping to grow in reverse for the next 8 months...and maybe by the end of the summer, Abby will be jumping in the lake and giving her poor little body a rest!
So our little town of Lunenburg has been making some noise! We've had new crews and newspaper articles...amazing what a little town can do when they get together. I saw the new crews reporting on the weather IN Lunenburg (when have you ever seen that???) Speaking our amazing little town, it is filled with BIG hearts...in our little town is a little school, (actually it's new and nicely sized for a small community)...in this school are little children with wonderful families, there are wonderful teachers...one of those is named Sara Kenney...she organized and created a beautiful calendar with all of Abby's classmates artwork and sold them school wide as a fundraiser for Abby's angels...the calendars are just darling and such a great idea! We cannot thank you enough and everyone else involved for your support. We are beyond blessed to be living in such a wonderful "little" community. "Little" Lunenburg isn't really so "little"...big hearts, big minds, big actions!
And as if that wasn't enough, thank you to the entire Gasbarro and Ruggles clans! I was so incredibly touched by your generosity...the spirit of kindness and love lives within us all!
January 3, 2009
It has happened! I has finally happened!! See, I know 2009 was going to be my year! Caroline has slept and stayed in her own bed for 5 nights in a row!! And that's WITH Abby on the steroids and needing me at night! AMAZING!! I never thought it would happened...I thought for sure I would be going to college with her, just in case (I still might:)
There was soooo much room in my bed...I actually stretched and moved and rolled...it was wonderful...again to those just starting out; don't EVER let them in....don't think it will be different for you...one child might not, but it will happen...poor Michael will get the shaft...just like with everything...with your first baby, you don't ever leave the house unless the car seat has been checked by the police dept. AND the fire dept...by the third, you just sit them where they can fit...you don't feed the first ANYTHING, unless you've "trialed" it slowly over the course of several days...the third eats crumbs in the sofa and car and as long as they're quiet, it's okay...I'm stretching the truth (but only a little :)
Michael has decreased his screeching and is replacing it with more and more words...now as a Speech Pathologist, I know he's not as "verbal" as he should be, but he's getting there...he makes up for it in gross motor, I'll tell you that, and fine motor for that matter...he can take apart anything with batteries and then figure out where the batteries go. He has been calling John by "John" and it is so cute when he goes to the top of the stairs and calls "John" "John", (just like his mommy does)...he is also into calling to his sisters, I am sure that I cannot write how he says "Caroline" phonetically but it is very close and very cute....something like "Ca-a-line", with a MAJOR emphasis on "line"...and Abby is "bye bye"...I just love this part of development...so so cute.
Monday is back to school, I don't even think I know how to organize for that anymore...I know that Abby has a back pack and a folder someplace...
January 1, 2009
I have a question....how do the Canadian coins actually get in the vending machines in the first place? If they don't accept Canadian coins or the Deutsche(that's one I've gotten lately) then how do I ALWAYS get one for change? I don't get it....
I know, meaningless little things...sometimes they get me...
Michael hid the little thingy that holds the toilet paper...you know, the thing that goes through the center of the roll and holds it on? Cannot find it anywhere...I half thought that maybe John hid it as a joke but then realized that he had no idea what one even was...I mean, it is MUCH easier to just put a roll of TP on the counter, reach for it, pick it up, use it, put it back, then it is to just unwind a few pieces on a spinning rod...John didn't even know that it was missing...I love you honey, but you are a man...
So, HAPPY NEW YEAR!!! I've never been one for resolutions but this year I have about 20. I think I never wanted to commit to a "goal" or "resolution" in the past because I didn't want to set myself up for failure but you can succeed without the failures...2008 was 2008 and that's about it...it was a tough year in so many ways but as time passes and we look back, we'll only remember the the good stuff, like our AMAZING trip to Disney from the Make-A-Wish foundation...it was such a whirlwind...Caroline started preschool and just flourished...I took a class and got an "A", yeah for me!! I learned how to text and got myself on facebook...Michael continues to expand his vocabulary and grow into this sweet and happy little boy...Abby is passing through her treatment, a few bumps recently, but everything is going well. She had clinic on Monday and everything was good so she is up to 75% of her chemotherapy...the Dapsone that she is on (it replaced the Bactrim) is still a little concerning to me because sometimes Abby's color looks really gray so I worry about the Methoglobioanemia but if her color continues this way, they'll test her specifically for that during her next clinic visit. It's a steroid week and hasn't been to bad this time but she has also slept at Mimi and Boppa's and Auntie Kerry's 2 nights this week so I haven't had much of it....But it's one step closer to the finish line and I can't wait...2009 is our year!! So here's to good health and happiness in the new year!
There's something I do want to get out there to everyone and anyone who has supported us in ANY way...I am so so sorry if you have not received a direct thank you from me...I made a promise to myself that if it took me the rest of my life, I would write a thank you card to everyone that I possibly could and I am still working on it...not as a chore or a hassle, but something that means a lot to me...there were times when there were outpourings of gifts, cards, donations, and it was impossible to keep track of everything...sometimes a friend or family member of friend, etc, would do something so kind for us and we wouldn't always know who it came from...so if you did something or know someone who did something for us that hasn't received a thank you card, please feel comfortable letting me know or introducing or re-introducing yourself to me; there were so many overwhelming moments and I know that it is not about getting recognition...the acts of kindness were totally selfless and I know that nobody wants anything in return except the knowledge that they helped a family in need...and that's exactly what happened and I've written and said over and over that these acts of kindness will be paid forward time and time again...it seems as though any way I could word it wouldn't be enough or would sound cliche...so sometimes simple is best. Thank you.
December 27, 2008
So it's been quite an adventure these past few weeks! Whoa am I glad to say goodbye to 2008! I tell you, 2009 is our year!! Despite all of the craziness with Abby's hospitalizations and the power outages, Christmas was just magical! Really it was! We had amazing Christmas Eve with family, and a calm, quiet Christmas day all by ourselves. The girls were just as happy and excited as could be and these are the moments that make all the yucky (spoken like the mother of a preschooler) ones go away...I've decided that the ration is about 1:5. 1 magical special little moment can take away 5 of the "yucky". For example, Caroline could whine for about 3 hours one morning about absolutely nothing..but then she could smile with her little dimple in her cheek and twinkle in her eye and it makes the other stuff go away....Michael could move his little step stool all around the house and empty all of the drawers but all I need to hear is one of his little calls, "mama" "mama" and it all just goes away...I just love them all so much!
There were some special surprises (I continue to be amazed by the generosity and thoughtfulness of those around me)...I know you want to be anonymous Dick but WOW!! you are Abby's little angel for sure...timing is everything, it just is...to all of you at the Claw Shop, again, I am blown away and need to thank you from the bottom of my heart! I can't remember the last time I had so much fun for myself...the basket was amazing and it was little a million little fun surprises and it just made my day, you have no idea so Thank you, thank you....and thank you Ammie (I still don't think I spell your name correctly) for your support and getting all of that together for me...I felt like a princess and can't wait to use all of these fun products!!!
Merry Christmas to everyone!! Leave a light on (or two) and enjoy your heat and electricity...you never know when it will go again :)
December 23, 2008
Our power returned late yesterday afternoon, as soon as John had gotten Steve and hooked up another generator (after leaving work AGAIN)....just as John was driving away, POOF! power back on! We are not in a trusting relationship with our utilities yet...we still think that they might leave at any moment, no matter what kinds of promises we make...so it's still a little tentative...we'll see how it goes.
I am looking forward to moving on and making this the most fantastic Christmas ever! My sister is right...everything really just goes back to Star Wars...the battle between good and evil...no matter how hard you try to be the good guy or cheer for the good guy, that bad guy has a way of testing that good guy over and over again! But you know what? The good guy always wins, always! So look inside your self and be the good guy...I just want the dark looming shadows to turn into sparkly happy bright clouds...like on the Little Mermaind when they finally kill the sea witch....everything just transforms into beauty...
It was good for me to be back at work today; a break from the gloom...and I just work with the greatest group of people ever...they collected to help us pay for our generator...unbelievable! EVERYONE is struggling right now and it is a hard time to give but WOW, these Heywood folks, they are winners...kind, loyal, genuine, loving, winners! The real deal...you are just like the pitchfork in the seawitch's heart...made all of the bad stuff shrivel away and all of the beautiful stuff glow again...You brought me sunshine and that's something that money can't buy so thank you all for caring and sharing. It just turns it all around...if I don't know you, please come introduce yourself and talk to me...I want to know your story and what you are about...everyone knows my woes, my vents, but I want to hear about you too. I really really do.
Merry Christmas to All! Happy Hannakah too!! Dayna and Nancy, time and time again you are there for me. And Thank you Bruce and Aime for taking the reigns on this amazing act of kindness and generosity. My family is warm and safe and now just sooooo much less stressed!!!!
December 22, 2008
So it got a little frustrating as I am sure it has been for everyone effected by this power outage. On Saturday, things got a little worse. Our generator died and after hours of my Dad and John trying to get it working, they threw the towel in and brought it back to home depot. They wouldn't take it back or provide a replacement but they were willing to "send it out for repair", which would take about a week. Defeated and deflated, John and Dad headed back home...now they traveled to HD in a snow storm, waited an hour to even get this information and then went back home in a snowstorm so John could turn around and drive to work in the snowstorm. I cannot believe that HD wouldn't give a replacement, given the set of circumstances....first, the generator was only 9 days old...I won't get into it, bottom line, LOWES has found themselves a new customer...I tried calling UNITIL but they had "CLOSED" their phone center and apologized for the inconvenience...ARE YOU KIDDING ME???? So, we could have potentially had power but had no way to find out because we couldn't talk to anyone at Unitil, our main line was shut down because it was hard wired to the generator, and there were individual houses up and down on my street so we couldn't tell without getting an electrician to come try. I called our police station to see if they knew anything and they didn't because Unitil was supposed to be updating them every few hours but hadn't.... Well, try to find an electrician in a snow storm on a Saturday when half your county needs one...that's when luck changed a bit...GOD bless you and your family, Chris Richards, who doesn't even know me, stopped by my house on his way (with his wife and small children) to a Christmas party and re-connected us! It was so incredibly nice of him! We cannot thank you enough...Murphy's law then showed it's smiling face again, as we realized we were out of oil...Oil guy, not so nice, gave me a hard time, I won't go into it but everyone is stressed, not time to be taking it out on each other; everyone should vent it out on a website like me...I have done nothing was smile and talk nicely to the people on the phones and tried to make light of it but it really didn't matter...when all I felt like doing was screaming...we are ALL frustrated...I cannot believe that there are people out there taking advantage of others, stealing generators, robbing homes..it just blows me away. Anyway, oil guy came out and changed his tune and we were back up and running!! Sunday was glorious...I did laundry and dishes, and cleaned and cleaned and cleaned...with a fresh cup of coffee from my own coffee pot and I was WARM!! Even had to turn down my heat a bit :)
Short lived, we woke up today without power again and I packed up my 3 kids and showed up on my parents door yet step again...This time I reached someone at Unitil and it turns out a transformer went down during the night and they were working on it...that's all I'll complain about this again...I am sure we will be back up and running by tonight and I know others are still without even a day of power. So I am going to try to drain the negativity out of me and try to turn this all around. My kids are happy and excited about Christmas and it will be a healthy and wonderful time. I hope everyone is warm and safe.
December 20, 2008
WOW!! I am on my Dad's computer and am still blown away by this "storm"....We are still without power and as we speak, John and my Dad are trying to get our generator back working (yes, it broke, brand new, used it to save our furnace by using it for our sump pump)...It's been tough all around for everyone, my sister's family just got their power back 2 days ago and my parents later that same day...but we didn't and still don't...I actually (well my mother did) got through to a Unitil rep today and just got off the phone with her...it turns out that Ashby, Townsend, and Lunenburg (really, I didn't know :) were hit the hardest and that we live in one of the "pockets" that still haven't gotten their power back (Oh, didn't know that either :)...she was very nice really, but the lack of communication with SPECIFIC information has been unacceptable...across the board...the towns should have very specific information and should be in direct contact with the heads of these companies and be relaying that information in a timely, succinct manner. The Unitil rep told me that there were "miles" of areas that needed to be rebuilt entirely, everything had gone on them. She said that 40 crews from National Grid would be joining Unitil today (only 10 days later!)...one woman on my street was told today, man directly next to us was told after Christmas...so how do we plan, how do we know what to do? Do we go down to Home Depot today and fight with them to allow the return of the generator that is now broken and hope we get power today and that our basement and furnace make it? It's just the unknown more than anything...
We lost power last Thursday night, 10 minutes remaining on an intense Survivor immunity challenge, I might add...our basement flooded and John, God bless him through all of this, during his busiest work season, devoted himself to saving our furnace. He trekked back and forth to work and home, getting up at crazy early hours, finally getting a generator from Home Depot and getting our pellet stove started...he was really in his element, an ex national guardsman, a man with a fire, a light, a blanket, and a tv...it'so simple for them really....we were so cold and we all piled in at Mimi and Boppa's in the dark but they had a gas fireplace...sounds quaint, but it was just miserable...Michael didn't understand and only wanted to play with the cell phones...if he didn't get them, he just screamed like someone was pulling his fingers off one at a time...so my only line of communication was as stressful as could be because he wouldn't let me talk on it...my poor parents, thought they could escape and took off to their condo in Maine, BUT...we followed them, me and my 3 kids and Meghan, I thought it would be nice to take them swimming in a nearby hotel...should've known better...kids still whine in crisis times...and sure enough, 10 minutes before the season finale of Survivor and Abby has a fever...I called UMASS, not ready to make the 4 hour drive and stay up all night in the ER, but we were lucky that they have a relationship with Maine Medical Center in Portland so we took her to their ER...Big Grandpa put the kids to bed and Mimi and I set off with Abby...now let me just tell you about the staff at Maine Med....after the 3rd person came in the room, my mother just looked at me and said, "What is with these doctors?" I just laughed..I knew what she meant; never mind "McDreamy" and "McSteamy"...we had just found ourselves in another world...the world of beautifuly people...suddenly my nonchalant attitude of wearing pajamas to the ER seemed to matter....WOW...these people were just Gorgeous and young!!! They did a fantastic job and we were in and out in 3 1/2 hours!!! We have never been in and out of an ER that fast EVER!! Everything turned out okay; she got her IV antibiotics but her labs, urine, and chest x-ray were all fine...it was one of those moments, where I knew she had a fever and I could have just dropped to the floor and cried and gotten into a deep dark place, not again, not again....or I could take a deep breath and let it be...I chose the latter, sometimes you can't choose, your emotions just get you...so anyway, we trekked back home on Monday, fulling expecting our little town to be back on; more bad news would follow....the wires on our road hadn't been touched, but John managed to keep our furnace alive, we were only able to use the generator for a few things but then Rich Hume and DMH saved the day...they hooked our generator up to our furnace and we got our fridge back!! We still couldn't cook or do laundry but that's what Audra's house was for the following day...so we got a few more days and then last night, our generator pooped out...so here we are back at Mom and Dad's...those of you who think kids leave the house at 18 and go out on their own, you are WRONG WRONG WRONG, I am 36 and like a boomerang to my parents house...
Abby's fine and we are all healthy, that's what matters the most...I feel for all of you who have suffered through this storm, it's really hard to make the most of things, it sounds easier than it is...you envision families gathered around candles, telling stories and playing games...the way life should be...but it wasn't like that at all; at least for us....so according to the Unitil worker, crews are coming to our street today; we don't have any more information than that but she put a "work order" out for us...time will tell....
December 8, 2008
So I think that we are back on track...Abby hasn't been back to school but she finished a week of steroids and only has a few days left on the last of her antibiotics. She is on 50% of her chemotherapy. The only thing that she is not taking is her Bactrim. This is a medication that is used preventively for Pneumocystis pneumonia, which is a type of bacterial pneumonia that affects people with weakened immunity. She usually takes it 2x/day for 3 days per week. The problem with Bactrim, is that it can cause bone marrow fatigue or suppression in some Leukemia patients, and this may be why her ANC was so low for so many days when she was in the hospital. So in place of the Bactrim, she was given something called Dapsone....the problem with Dapsone is that it can cause something called methohemoglobioanemia, which is basically a funky thing were the oxygen isn't doing something right in the blood...in a nutshell, Abby turned blue...she was blue for a few days and we kept mentioning it and the doctors kept saying, "well, she DOES have pneumonia and she IS on oxygen"...well sure enough after one night of touching her every 4 seconds, I called and spoke with the oncology team and found out about the methohemoglobioanemia and she was taken off the Dapsone. She turned pink within 24 hours. So now, we will wait and see at clinic on Thursday...the blue thing was very scary because when she was diagnosed, we had initially brought her to see the doctor because she was green. Now anyone that knows Abby, knows how pink she has always been. She was a beautiful baby (and I am really not just saying that because I am her mother)...she just had the perfect skin, rosy cheeks and lips, I was often stopped in the grocery stores and in elevators...always asked if I put makeup on her for her pictures (now anyone that knows me, knows that I wouldn't have EVER put makeup on a little girl...NOT every going to be a pageant mom!)...anyway, she's kind of pink again but the steroids also effect that a little.
So that's it for the medical stuff for now....she will hopefully resume some of her school and activities this week but LIGHTLY....
Yesterday we had Meghan over for the day and we made 3D snowflakes and gingerbread cookies. I just gave the girls their own bowls of frosting and sugar sprinkles and they went nuts! I think I still have an inch of blue and purple sugar on my floor (didn't have any red or green so we just made them pretty!)...It kind of feels like the holiday season now; glad I am an early bird so I was done pretty much before all of this stuff happened for Abby...the roller coaster was as high and low as it gets...puts it all right back into perspective...
December 3, 2008
She's home but she is miserable from the steroids. We also found out that one of the new medicines that she is on can cause some sort of anemia and that is probably why she is blue so she will be off of that for a few days...it would be nice to see her rosy pink cheeks again and not because of a fever. She will go back to clinic next week to follow up with everything.
I would like to thank Abby's brownie troop for their amazing gift! Abby and Caroline spent hours with their new "craft box", each time discovering something new to do! Truly thoughtful...what a wonderful group you are!
December 2, 2008
She came home tonight!! She is doing well...her color is pale and she needs to recover from the pneumonia but she is feeling well and resumed her chemotherapy today...unfortunately it is a steroid week so she started those today as well...when it rains, it pours. We are so happy to have her home and just pray for health, health, health. She will need to stay home for a few days and will return to clinic next Wednesday to check on things...so hopefully, no hospital visits until then!
In all of the madness, I didn't mention how amazing Thanksgiving was! It was calm and peaceful and just nice family time...I hope everyone had a wonderful Thanksgiving! Believe me, I know what I am thankful for.
December 1, 2008
I am exhausted and frustrated right now...it takes an exorbitant amount of time to get any answers when your child is in the hospital...I get it, I get the whole thing..I am a team member in a hospital, I understand that everyone has their role and puts the pieces of the puzzle together but to get one person to put it all together and let the parents know so that they can plan would be nice. Yesterday was scary, Abby initially freaked out about having to wear oxygen and once she gets anxious about something, it is difficult to calm her down. They had tried an adult size nasal cannula on her in the ER and it bothered her nose so she decided that she wouldn't wear it and that she would try a mask. She tolerated that for a short amount of time before it began to bother her. So she just had a tube of O2 blowing next to her for a while but it really wasn't helping so I began to get anxious because I knew how important it was for her to have the oxygen. The nurse who worked with her on this was very patient and calm and finally convinced Abby to wear a pedi cannula with the nose pieces trimmed down...it still bothered her nose and she complained about the "air going through her nose"...so a nurse's aide came in and just suggested some mist with the O2 and it was like magic...if someone had just tried that an hour earlier...anyway, you never know what's going to work...Abby eventually ended up with the tubes taped to her face and that wasn't bothering her any...go figure. I slept at the hospital with Abby last night and basically didn't sleep at all...her O2 machine beeped every time it dropped to low, which was basically every few minutes...so I watched it like a hawk for a while but then became comfortable with her pattern so I could relax a bit but all of the horrible things run through your mind. So I finally fell asleep, only to be awakened abruptly by a "Mrs. Laine, Abby Laine...we need to get a chest x-ray"...no gentle probe on the shoulder...just like being in the army, "Get up!!!" I understand that they needed it early but I had JUST fallen asleep. I am venting like nobody's business right now...it was a long night and long day...and I just wasn't in the mood...I didn't feel like being nice to the student nurse, I didn't feel like giving Abby's entire history for the 6th time, I just wasn't up for it and probably wasn't very nice to anyone. I was just so tired of it all. I just wanted to know a plan...what were we waiting on? If A, then B? If not A, then what?....just wanted to be able to tentatively plan for my other children and my job that god only knows how I still have. My mother, God bless her, just plans it all for me...I don't know what I would do without her...I just can't even process all of that and before I can even try to, she has it all written out...amazing!!
To top it all off, I raced from UMass today to bring Caroline to her swim class (I wanted to spend some time with her but also wanted her to try to do some of her routine things) and the road was completely blocked by a tractor trailer truck that was stuck sideways...so we couldn't even go...what are the chances??
So here's the bottom line...Abby will be in the hospital most likely until Wed...she will resume her chemotherapy tomorrow (what she was supposed to have as an outpatient in clinic today)...she has a UTI which is being treated with the IV antibiotic she was already starting, and her pneumonia definitely worsened today from yesterdays (chest x-ray results) but is likely viral. Her blood counts are good, she is afebrile, and she is comfortable and feeling well. We just need to have her O2 sats come up a bit and wean her off the O2...so that's it for now...I am just tired and complaining....they are good to us there and the oncology team is wonderful...I just needed a good vent!
Goodnight....
November 30, 2008
I just spoke with Kelley. Abby has pneumonia. They were talking about sending her home but her oxygen levels were too low, so they kept her for IV antibiotics. She is sleeping now. She has had a long day. Hopefully, she will get some rest tonight so her little body can get better. I love you Abby!
Audra Sprague
November 30, 2008
Hi everyone... this is Audra, Kelley asked me to put in an update for her today because she is, unfortunately, at the hospital again with Abby. She woke up with a fever and has had a sore throat with mild cold symptoms since yesterday. So that means another trip to the ER. She has an elevated white blood cell count (WBC) of 19.3. Her ANC is still around 1630, which is good. So they feel that her labs are indicative of an infection, not neutropenia form the chemo that she just restarted. She is such a good girl. Abby and I sat and played the world's longest game of Uno while we waited for some results in the ER and she was laughing and smiling the entire time. She is just such a joy to be around, even when she is not feeling well. They were unable to access her port, we only gave them one try, it is just too hard on her when they keep sticking her repeatedly and poke around in her port. So they ended up putting the IV in her arm. They are not sure where the infection is at this point, I will let you know more when all the results come in, but she is being admitted to the hospital now. Hopefully, this stay will be shorter for her than the last one. Please keep her and her family in your prayers.
Audra Sprague
November 26, 2008
ANC = 2200!!!!!! That's all you need to know right now :) :)
I still need to emotionally recoup from all of this but we have very GOOD news!! Went to clinic today and got these results....she can resume her chemotherapy at 50% today and we'll go back on Monday to find out more...but she can have a nice Thanksgiving with her family without fear of germs and hugs.
Thank you all so much for your prayers and support. I'll keep you posted, of course....
HAPPY THANKSGIVING TO ALL!!! Make sure you tell those you love how thankful you are for them....
November 23, 2008
The prayers for more neutrophils were answered...Abby jumped up to 249 from 0 yesterday and that is great news!!! She came home with us and I cuddled with her all night!! We still have some unanswered questions and will not know more until the Monday after Thanksgiving when her blood analysis comes back. The probability of a relapse is slim but is still a possibility and I am realizing more and more that the "possibility" will always be there...we will not just "get this done" in 2 1/2 years; it will always be there.
It likely that Abby had an infection on top of whatever was stopping her neutrophils from improving...her body might not be tolerating 2 of her medications; one has already been changed...the other we will find out about in the blood work on Monday. So, more "wait and see" but basically, she is not on any more IV antibiotics, is afrebrile, is happy, energetic, and playful, so there is no reason for her to stay at the hospital right now. I already told the doctor that I am NOT going to that ER again. I will drive her to the doctor's house but I will not go through another ER experience with my daughter.
She is still neutropenic and cannot go to school or activities but should be able to attend Thanksgiving dinner at Aunties.
I cannot explain how difficult this past week was. It many ways it was worse than finding out in the beginning. The first time, we weren't expecting it...this time, we read into every possible piece of information...Did that nurse smile at me? Did she smile to give me a knowing glance that she had bad news later? I would see the doctor arrive and be sitting at the nurse's station...Was she gathering up the "bad news"? Why didn't she come to our room first? Was she giving all the good news first? Was she waiting to get a team together so med students could experience what it was like to give a family bad news? When she walked in the room, what was her face saying? Thumbs up, thumbs down? Seriously, I wanted to just go crazy and not have to deal with any of it. It was the most emotional roller coaster that you could ever imagine. One piece of good news, one piece of "I don't know" news..."Possibility" news....all of the waiting and thinking and worrying and praying...all of this while Abby smiled and played and had visitors. She has no idea of what everyone around her is going through...all she experiences is the love and joy that comes from all that know her. I hope she never knows my end of it...never ever!!
Thank you "Mommie Mobile Meals"...you are an amazing group of women! Lyn Giancotti, you are the "real deal", an inspiration to all that let the negativity get in the way of all of the good in life there is to experience. And let me tell you, I was loaded with it this week. I was cynical and self involved, and quite frankly, didn't give a hoot about anyone else's problems...and it doesn't feel good to feel that way, it solves nothing, gets you no where, and is no way to live. But it does just give you that "kick" again...the meaning of life...enjoying what you have and the moments you have with the people you love...a lesson we learn time and time again and I think deep down, we all understand that lesson but living it is another thing altogether.
Thank you for all that visited and prayed for Abby for all of the kind and warm thoughts! Thank you again and again and again to my family and friends for endless babysitting, phone calls, trips to the hospital, etc, etc, etc! I cannot say it enough how blessed I am to have the people in my life that I do! I know that it is exhausting to know me...
Please keep Abby in your prayers...she has a way to go and let's hope that this was just an infection that taxed her bone marrow. Any altering in the plan of treatment can effect the outcome.
November 21, 2008
Well we really still don't know much more...the "path" wasn't there today but doesn't mean it couldn't be there again but that is GREAT news for now...Her overall WBCs went up and that is also good, BUT...her "seds" did not go up and her neutrophils are not going up and we don't know why...there are several possibilities and we are waiting to know if it becomes one of them...she could still have the autoimmune antibody thing, or her body could be responding to one of her medications...the most sensitive blood analysis takes a week to get back so there won't be anything conclusive until the Monday after Thanksgiving, unless, of course, her neutrophils go up in the next few days so that is it...Please, please, please, let Abby's body make neutrophils like some crazy ass machine!!!! Pray for neutrophils, pray for neutrophils...healthy infection fighting cells!!!
November 20, 2008
I'll make this brief..Abby doesn't have the autoimmune antibody but there is a possibility of a relapse...very complicated blood cell stuff but preliminary findings have been somewhat reassuring. Pray like you've never prayed...we will find out tomorrow. If you need something specific to pray for, pray that her ANC comes up and that she has no "paths".
November 18, 2008
Okay, I had my major "freak-out" yesterday so I am on the mend today...I'll make this quick because I am only home for brief moments and want to go crawl in bed with Caroline....Abby has been afrebrile for over 24 hours and that is a very good thing...her neutrophils, however, are not going back up as they should have by now with all of the antibiotics she is getting...so they are questioning an antibody autoimmune condition where her own white blood cells are attacking each other...if this is the case, she will be treated with a daily hormone injection and it could take some time for her counts to improve...she will still be treated with IV antibiotics for 5-7 days...this will be the case no matter what happens in the next day...they also think that she likely had some sort of infection...we will know more about everything tomorrow...on a good note, you would never know that she is sick...she is coloring, painting, reading, playing games, and VERY busy! She is just about the most precious adorable little thing that you could imagine and she thinks she is "lucky" that she didn't have to stay connected to her IV pole all night...Boy, she's sure is "lucky"...I love her soooo much! Please pray for her health and well being!!!!
November 15, 2008
It was smooth for a while...I was at a conference all day on Friday and when I came home John informed me that Abby was complaining of a sore neck when she got off the bus...she said it started after gym class...it wasn't a sore throat or anything like that and she didn't injure it...anyway, she felt warm so I took her temperature...of course, I got about 6 completely different readings but I knew she had a fever..after a few back and forth conversations with her oncologist and a trip to Mimi's to try another thermometer, we were off to UMass...Abby was admitted and she will be in the hospital for at least a few days...there is concern about infection in her port and she may need to have it surgically removed. In the meantime, she is being monitored very closely and receiving LOTS of IV antibiotics...we left for the ER around 8:30 on Friday night and she wasn't admitted to the floor until 4 am today. John will stay with her tonight and we will just pray that her weak little body fights off this infection...her ANC is 0...which is the lowest it has ever been. We will know more tomorrow after her 24 hour labs and also if she continues to show symptoms of an infection. Her chest is swollen and she has a cellulitis above her port that hurts quite a bit...BUT, she is a champ! So, we will just "wait and see"...can't even stand it.
November 9, 2008
It was a tough week for Abby; she only made it to 2 half days of school and just wasn't feeling well. She bounced back this weekend and is now herself again. I watched the movie about the sisterhood of the traveling pants last night and just cried and cried...what a good little movie; that's just the kind of thing I like....there was a movie that this reminds be of that is similar and I can't think of the name but it always reminded me of my sister and my childhood for some reason...just lazy summer days, riding bikes...It was with Demi Moore, Rita Wilson, Melanie Griffith, and Rosie O'Donnell, 4 friends flashing back to their summer...I cannot figure it out...anyway, on the traveling pants movie, a little girl dies from Leukemia..it's not a central story in the movie but it helps this one girl to realize a little something about life...it was such a simple lesson but one that is so hard to learn and needs to be taught over and over again. I NEVER allow myself to think about the "what ifs" but every now and then, it seeps through just a bit...and then I realize how afraid I am of the "what ifs" but I think it's okay to let myself go there every now in then...there is no rule book for this but somehow I feel like if I think positive about the whole thing, there can be no negative outcome....but then I also think...this has been going pretty smoothly....so I stop and bury it all...I climbed right into Abby's bed and just snuggled with her...it's the top bunk so of course I couldn't stay long...I could just read the headlines..."solid" (that's the word always used to describe me throughout my life...my sister was "slender" and I was "solid") woman breaks daughter's bunk bed and hole in ceiling.....so I got out....climbing in Michael's crib was out...lucky (!) for me, Caroline climbs in every night so I got to snuggle with her and her daddy...
November 5, 2008
My grandfather passed peacefully on Saturday evening with his children by his side. He is with his Elizabeth now and he is comfortable. I need to take a moment to express how amazing my Aunt Kathleen is...she was a devoted daughter and friend to her parents...I know how proud they are of her and all of their children. I have a fine group of uncles and of course, my auntie :) Auntie Kathy you a strong, loyal, and caring person and I am happy to know you. And Uncle Mark, same to you! The service was beautiful and just as simple as he would have liked it. He was honored by the service men and when they played "Taps" it was just one of those moments...when there is nothing wrong in the world and there is only peace and solace...a moment that you can't freeze or even really feel unless you're in it...I was glad to have that moment, especially today.
Abby had her spinal "back test" on Monday and she tolerated it well again...she just rests comfortably while she listens to books read by the child life specialist...I sit in the back and rub her head and watch (I know it's strange but I really do like all of that "medical" stuff)...she's very cranky and tired this week; she hasn't gone to school and she's been to bed early...God I just love her! She's getting so big and barely fits into my lap but I can't imagine the day that I can't put one of my babies in my lap.
Caroline broke out in the worst rash I've ever seen...it started Monday night but really spread last night...she woke up every half hour, crying and itching...she scratched so hard that she had bleeding sores all over her. We managed to make it through the night and got to the doctor's office first thing this morning....still don't know what caused it but she'll be on Benedryl and Zyrtec for at least a few days...needless to say, I was almost late for the funeral (John was taking care of the other kids and meeting me there) so Caroline came to mass. She was pretty good for a while but had so many questions, and usually when it was silent in the church. After we said, "praise be to god" several times, she asked me (very loudly and with a little attitude), "Why do you always say that?"...Uncle Mike just kept feeding her candy...I swear he has some sort of magical pocket :)
I feel so badly for her...I scratch just thinking about it...I'm downstairs not quite ready to take on the night yet....Boy would I love to have that "Taps" moment just a little longer...
Peace Grandpa...I love you!
November 1, 2008
Whew! It's been a while...things have been going pretty smoothly and that's a good thing...I've been working a lot; the kids have been busy and it's been a "normal" life for a while. "Normal" is such a funny word....I use it all of the time in my profession...we say things like "WNL" (Within Normal Limits)....his hearing was "WNL"; his swallow function was "WNL"; her speech and language skills are "WNL"...What does "normal" mean??? I think it all depends on what your reference is...with testing, we look at the bell shaped curve and standardized scores...which, of course are based on "Norms" developed on research of "normal" populations...I think my reference is just going about day to day business without interruption or crisis, without extreme emotional ups and downs, being able to discipline my kids and get upset when they do something wrong, being able to tuck them into bed, and clean my house...just the day to day "normal" things...no ER visits, no clinic, no steroids, no tantrums or meltdowns....so things have been "normal" for a while and it's nice to be "normal"...no matter who you are and what you believe in, I think at some level, we all just want a little "normalcy"...
So to catch up a bit...the good things first...my children enjoyed an extended Halloween season...Halloween is the new Christmas...which means that I can really believe that 40 is the new 20 and that is really good news! The girls wore poodle skirts, scarves, and cat's eye glasses...Michael was a little greaser boy with a leather jacket and cuffed jeans...soooo cute! First, they went trick-or-treating at Maureen's...thanks to a special invite to Riley's 1st Birthday party...Trick-or-Treating the way it was meant to be for little kids, in the day time with other little kids...they had a blast. Abby pooped out a little early so I got to have some special time alone with her reading books. She has become so enthusiastic about her reading and it is wonderful to watch! She reads books to her sister and is constantly just grabbing books and reading aloud to herself and to anyone who will listen.
Then, of course, we got to trick-or-treat on Halloween night...this time it was dark and a little scary but still loads of fun. Let me just tell you about the plastic pumpkins. It's funny what you don't want to spend your money on and what you'll do to save a penny when it comes to certain things. I saved 2 of those big plastic trick-or-treat pumpkins ALL year! Do you know how hard they are to store??? I would open a closet and they would fall out so I would move them to another closet and they would fall out...they were in bins in the girls' room, on the shelf in the laundry area, you name it, they were there...I was NOT going to buy another one...WHY?? They cost a dollar! So instead of using something else for Halloween or using another dollar, I decided to save them all year...and do you know when I finally lost one and couldn't find it?? You guessed, the night of Halloween. Isn't that always the way?? But isn't that so "normal".
Another good thing (I feel a little like Martha but lots of "good things")...we came home one day this week to find a Tinkerbell movie on our front steps! What a pleasant surprise...we sure have one special fairy out there! Whoever you are, I hope that you know how much joy you spread because your little "jolts" of happiness are contagious! So thank you so very much!
My little baby is growing so much! He is now 16 months old and just as happy as can be. Mischievous is what we should have named him :) Today, he emptied all of the dirty silverware out of the dishwasher and put them away in the drawer...but I think he was really only trying to be helpful.
Today is my nephew Ryan's birthday. He is 12 years old! Excuse my french, but Holy Crap! Sorry, I know that is really not appropriate but that's exactly how I feel. I cannot believe he is a tween, working on teen hood! He was just this teeny tiny little preemie like yesterday...Ryan, I just totally love you and am so proud of what a wonderful young man you are! Happy Birthday!
Speaking of "holy" I need to confess (yes, that's the Catholic way, we "confess") that we have not been great with our religious education for our children. Abby started CCD this year and was going to have a quiz. So I asked her a few questions.."Who is Jesus?"....she answered, "God's brother"...oh boy...and it gets worse...we were passing the enormous Indian on Route 2A in Shirley and Abby asked (in amazement I might add), "Mom, is that Jesus?"...
And now, some not so good things...
My grandfather (my last living grandparent) has been living in pain for quite some time...it had always been attributed to arthritis and back problems...well, it was recently discovered that he has colon cancer...his options were to let it be and be treated palliatively or have surgery to remove it (knowing that he was a very "high" risk surgical candidate) and have the chance to live. Well, he wanted to "live", God bless him, because I know he misses his wife tremendously. So, they removed a stage 3B tumor on Friday and he is not going well. I was with him for a while today and it is so hard when this kind of thing happens. You start to think about mortality and question life and reflect on memories....it makes you realize how truly precious life is and how you need to make your relationships matter and you need to let people know how you feel about them. You need to connect with the people in your life because you never know when something is going to happen to change your life, for better or worse. You need to find ways to make things positive and take the good from whatever is happening because it is so much more work and so much more exhausting to let the negative get to you. My grandfather has lived a long and full life...he has 4 wonderful children...but having a long and full life doesn't make it any easier when it's your time to go. My grandfather liked to tell stories, boy he had all his marbles in tact...he could remember everything..."let's see, it was 1947, a Tuesday, and the sky was bright blue..." My favorite story was always about how he met my grandmother...that, and how he thought my father looked like "dinny dimwit" when he was born :) I love you Grandpa! I hope that you have a peaceful night.....
October 23, 2008
I had written a summary for the golf tournament and only thought it was fitting to have it posted on the website as well....just a little summary of where we've been and where we're at.....
It was a year and a half ago that Abby was diagnosed with Acute Lymphoblastic Leukemia. The past year has brought many challenges, emotional and financial, but more importantly, it has brought an insurmountable feeling of support, love, and kindness, that has given our family the power and the inspiration to help our daughter, and our family fight this disease. The gift of those who have sent their love, prayers, thoughts, is indescribable…it cannot be measured, it cannot be seen, it cannot be heard…it is the most amazing and powerful feeling of comfort. The good that exists within humankind is so much more than we could even imagine and I am thankful that we were blessed with this experience, for the good and the bad…because without this experience, we would not know about this gift that lives within all of us…the gift of love and compassion….the gift of kindness…..it’s a presence of spirit that we have had with us since Abby was diagnosed…we know that we are never alone and the strength that comes from that is truly invaluable.
Abby has passed through the 3 most difficult phases of her treatment…although they were the shortest (6-8 weeks each), they were intense. Abby’s lost her hair twice, learned how to swallow 12 pills at a time, suffered severe night terrors, had knee and joint pain, labs, labs, and more labs, many, many trips to the ER, nausea, and headaches….Her poor little body morphed and changed with her dosing of steroids….her belly hardened and ached…..but she was a champ…a baby girl who grew into a young girl with maturity beyond her years….a girl who embraced her disease and treatment….a girl who learned the names of her medicines and what they did for her…a girl who always wanted to be active in her treatment, making sure she got to put her EMLA cream on, take off her bandages, flush her port….she asked questions and made sure the nurses were doing what they were supposed to be doing….she knew when she missed a pill or if Mommy and Daddy were forgetting something….she watched as her cousins and siblings swam and played in a lake when she couldn’t…she went to school when her belly hurt and took her heating pads back to class because she didn’t want to miss anything. She cannot possibly understand what she has gone through in such a short time and for that I am thankful.
Abby finished Kindergarten and was fortunate (fortunate doesn’t even begin to cover it) to have the most wonderful, nurturing, loving, and kind group of people around her. She enjoys school tremendously and has just started 1st grade. Aside from her medical treatment and clinic visits, Abby experienced the most amazing vacation that any one child or family could ever imagine. Through the Make-A-Wish foundation and Give Kids The World, Abby got to see Tinkerbell and meet all of her favorite princesses in Disney World. She rode the carousel too many times to count and ate endless piles of ice cream and cotton candy. She rode in a limousine and an airplane….she was pampered and beautified with her sister at the Bipity Bopity Boutique…..She enjoyed a low-key, ER visit free summer with many swims in the pool and her 6th birthday celebration…Tinkerbell themed, of course….she took boat rides at Big Grandpa’s and Mimi’s and played with her sister, cousins, and friends. She is an extremely blessed little girl…
She is currently in her 4th, final, and longest phase of treatment…it is called “Maintenance” and with it comes daily and weekly oral chemotherapy, monthly injected chemotherapy and steroids, and quarterly spinal chemotherapy….but the medicines remain the same and her response to them should be stable. Her hair should continue to grow and her color should remain pink and healthy…..If everything continues to go as well as it has, she will complete treatment in August of 2009….and there WILL be a CELEBRATION!! When she completes treatment, she will continue to have monthly follow-up and as time passes, the amount of follow-up will decrease, and in the year 2014, she will be considered CURED!!! Abby will be 12 and I am sure, an amazing, strong, and beautiful young lady.
Thank you so much for your support….it has meant everything to us!
October 20, 2008
Well, it was a good run...always next season...no more calls to the bullpen with the corded phones :(
BUT....no more late nights staying up to watch the games!! I just love this time of year...John took the girls to Wachusett Mountain yesterday...there was an apple festival..they took the lift to the top of the mountain and had cotton candy and all of that good stuff that Daddys should spoil their daughters with. I stayed home with the baby...that's what having a 3rd means...there will still be a few more years of "take turn" parenting...it's all good. My little baby is just as happy as they come...he spends hours throwing all of my CDs off the shelves and emptying the folded laundry basket...he unplugs everything that is plugged in, shuts off my washer and dryer, throws food off his tray, finds every knife, screwdriver, and pair of scissors, takes the batteries out of every remote control...this is what he does...but he is HAPPY doing it and smiles from ear to ear..oh, how they melt their mommy's hearts!
Abby continues to do well; she is busy with brownies and dance and birthday parties...everything a 6 year old should be doing...last year at this time was so different and so hard...it's amazing how much you miss when you get it back. Last fall was not festive or filled with pumpkin activities and trips to mountains and apple orchards...last year was for lying on sofas and having visiting nurses and trips to the doctor...last year, Abby had gained so much weight from the steroids that we could barely get her Halloween costume on her...and it was a pirate, because it's okay for pirates to be bald...but this year she has thick beautiful curly hair and she is going as a 50s girl with a poodle skirt and cat's eye glasses...so beautiful..oh yes, what a difference a year makes!
My poor little caca is so bored when she is not at school. I am just not enough to entertain her anymore. She is sooo ready for Kindergarten...I'll just need to get her some playdates and maybe take swimming or something during the day. She just needs to be active. She has a cold and I am not sure how you teach your kids NOT to lick their lips so that they don't get the ridiculous looking red chapped ring around their mouths. My brother had that for like 4 years when he was little. I am constantly chasing them with the aquafor and slathering their faces. See, if it's not baldness, it's something else.
My personal goal was to deter using the heat until at least November 1st...I am sad to report that after 2 days of thick sweatshirts and multiple layers of covers, I turned on the heat....sad, sad day....Let's just pray for a tame winter so that everyone can get through this heating season.
October 11, 2008
Sorry, there are 2 entries today...I can not always remember what I have written and what is still in my head but I think chronologically...so Monday clinic went well, in and out in an hour! I don't think that has ever happened...Mike stayed in his stroller almost the entire time (also never happened before) and Caroline only panicked a little when they went to access Abby's port...she saw the big needle but once I explained that it was just like the flu shot that she had just gotten and it was the same way for Abby...the medicine would go into her body through the needle, she seemed okay. It dawned on me how little Caroline had been involved with the medical stuff...she clearly did not remember the visits from the visiting nurses and all of the crying and shots from then...the needed didn't bother her that much because after clinic I asked her what she thought and she responded, "That was so much fun!"...after clinic we did some errands and basically had a long day in the car with lots of sugar...not good for Caroline; we made it to ballet and Abby did well but Caroline was off the wall!! I was seconds from grabbing her and leaving but knew it was my fault. She just couldn't sit still and listen which apparently is hard for her anyway because she told Abby that the only time she needed to listen at preschool was during the morning song...after that, she didn't need to listen, just play...so we got through another clinic day; check it off the list....
October 11, 2008
What is wrong with the world?? Really??? On the "guestbook" section this morning was a thing from some sort of penis website, I mean really?? Who in their company decided, hey, let's market ourselves to families with sick children?? I mean, right after I read it, I said to myself, "Wow, I am so glad they wrote in because now I know where to go for penis information....I had been wondering that but now, thanks to excellent marketing, I don't have to search any more....and I am willing to bet that they have an extensive product line"...I mean, really, did this help them??
While I am seeking answers to questions, what is with the corded phone in the dugout? Is it for the drama..."he's calling the bullpen"...it is 2008, don't they have nextel or direct connect or something....why the rotary dial corded phone? I don't get it...but hey, GO REDSOX, what a game last night, paying for it now, but great game and fun to watch.
If you're sensing some sarcasm, it was a rough week...Abby didn't respond as well to the steroids and vincristine as she did last month. She only made to 2 days of school and just didn't feel well all week. I just hate seeing her like that...and you would think that I would know her and how she is but I am still second guessing my judgment all the time. On Thursday she was just crying all morning, didn't want to go to school, wanted to stay with me...so you're thinking "What's the big deal? So, she stays home with you"...but I know that she often feels worse first thing in the morning and then again at night so I thought she would "bounce back". On Wednesday, she didn't go to school (John was home with her) and an hour later she was playing outside on the swing set (Okay, all of the truancy officers out there, we will DENY, DENY, DENY)...I know she's not a behavioral kid and says what she means but how do I know when it starts to become manipulative or behavioral?? And how do I know how hard to push her to go to school? So I did, I told her that she could bring her heating pad and blanket and that I would stay for 10 minutes and if she still wanted to leave, she could leave with me. She seemed okay with that so off we went...first, we had to drop Caroline off at preschool...I had to carry Abby down Mrs. Craffey's long driveway while she was crying...I could feel the other mother's stares..."Oh, she's not feeling well"...(if you only knew)..Abby wouldn't talk to any of the teachers who were happy to see her and I just felt like we had regressed a year. I hate having to explain that this is not my little girl...not so much HAVING to explain as WANTING to explain...this isn't a miserable, whiny girl...she is a happy, calm, polite little girl...anyway, I brought her to school and then wanted to make sure that everyone knew that she wasn't sick (nothing that the others could catch) but just not feeling well. She sat at her reading table and seemed okay and was fine with me leaving. The only thing I really needed to do was go to downtown Leominster and pick up an FM system that I needed to set-up in a school later in the week so other than that I would be a moment away at home...when do you think I got the phone call?? Right as I pulled into the central office of the Leominster public schools....right when I was at my furthest point...Murphy's law...hey didn't I marry out of that name??? Not sure there isn't some sort of "Laine Law" out there. So she lasted about an hour and a half which was better than I expected and I am glad that she made the attempt. She had told me earlier in the week that she was afraid to ask for her heating pads in school...that just floored me...I had spent so much time worrying about the transition to a new classroom with no Mrs. Z and no Mrs. Mola and talking to her new teacher (who is also completely wonderful) that I didn't really talk too much to Abby about the differences this year. At the beginning of the school year, I told her that she wouldn't have heating pads every day but when she was on the steroids, she could have them, and extra snacks but she was really at a point in her treatment where she no longer needed her "comforts" outside of the steroid/vincristine weeks and I didn't want her to develop that habit in school. Anyway, I didn't keep talking to her about it and knew that the teacher was okay with whatever Abby needed so I just never thought that Abby would be afraid to ask...but why wouldn't she be? She is a little 6 year old girl in a new environment with a new structure...poor thing, I just feel so bad.
I can't stop thinking about the dug out phones...does anyone know the answer to that question??
October 5, 2008
This little conversation with Caroline speaks volumes about a child's perception...We were talking in the car and she told me that she wanted to be an ice cream girl, a superhero, and a mom when she grew up. So I asked her, "What does an ice cream girl do?"...she responded, "Make ice cream". (I was mostly curious as to how high her aspirations were, did she just want to scoop or did she want part of the ownership??)..but she thought it was fun that I asked so she told me to ask her about all of them...."Caroline, what does a superhero do?"..."Save people from danger"...great, "Caroline, what does a mom do?"...."go on the computer"...so that was it! I go on the computer...never mind all of the wonderful little things I do and the places I take them, that's it, I go on the computer...wonderful...see what this blog is costing me??? My relationship with my daughter :)
So it was time again to have to go to Market Basket, we were due for a BIG grocery store trip and I just wasn't up for it...so my lovely husband decided he would go which is great because he always spends less money...anyway, he didn't need a list (so we'll find out all week what we don't have) but I was thrilled to not be going...and he did a pretty good job, except we don't have any butter, we have 3 loaves of bread, and what family doesn't need 4 bottles of Worcestershire sauce? I mean, don't you just put it on everything???? But, he got grape juice, yes, grape juice...and he was VERY happy about it...I could just picture him in the aisle, reflecting on how much he enjoyed grape juice as a child and how much his kids would probably like grape juice...and he was right, they were soooo happy to have grape juice, not just plain old apple juice, this was special...why not just buy them each a pack of sharpie markers and some food coloring and just let them go nuts...grape juice STAINS!!! There IS a reason I never buy grape juice. Mean old mom, always on the computer and never buying grape juice...how fun am I???
So it finally happened; it has been 18 months since Abby was diagnosed and tomorrow is the first day that I don't have anyone to watch the other two or take Abby to clinic..so I am on my own with all 3 at the clinic...WOW! The problem is that there is really no way to contain Michael there, even with the best packed bag of tricks, there's just no way to keep him occupied in the area provided. There are 4 hospital chairs and tables and IV poles and lots of buttons to press and medical equipment everywhere, not to mention people trying to do their jobs without a baby running around them...so I called to "warn" them and to see if there was any way to streamline the process for Monday so we wouldn't be there for hours...they were so nice and allowed me to bring them on Friday so Abby could get her height, weight, and labs so Monday morning we wouldn't have to wait for all of that to order her chemotherapy...so off we went to UMass...Abby was just the best big sister ever! She was so excited to tell Caroline about everything and she let Caroline press all of the elevator buttons...it was so cute! It was good for Caroline to go and put a face with a name so to speak...she has heard us talk about clinic but has never been so it was a good little adventure for all. So Monday, we go again but it should be in and out and quick! Yeah!!!
October 2, 2008
I am not quite sure what to do....the tooth fairy keeps forgetting to come and get Abby's tooth. Abby has lost so many teeth in the past few months and she most recently lost one about 2 weeks ago...she lost it when her mom was at work and either she forgot to tell her daddy about it or he forgot to tell her mom....so Abby put her tooth in her special tooth fairy pillow but the tooth fairy didn't come :(
She thought it was because her tooth pillow fell off her bed so the tooth fairy couldn't find it...well, I think the tooth fairy just plain forgot and I am not sure why because she is usually on top of these things and, in fact, really enjoys her job as tooth fairy....BUT....almost 10 days past and Abby seemed to forget about it and it just created this vicious cycle of forgetfulness....so finally, I told Abby that I would write the tooth fairy a letter, which I did...but I don't think the tooth fairy got it until a few days later (must have mailed it parcel post) because she didn't end up coming until 2 nights ago!!! She did write Abby a nice note about how busy she has been with so many kids losing their teeth at the same time so Abby understood...
But do you think I should talk to the tooth fairy's boss?? So it doesn't happen again???
September 28, 2008
He's so cute I can't stand it! I spend half the day wishing away certain aspects of having children and the other half clinging on for dear life! When he climbs up on to the kitchen table, I think, Oh please let this phase pass, please let this phase pass....but then I see him up on the table looking proud as punch with a sh-- eating grin on his face, I think, Oh this is my last little baby...my last spurt of gross motor development...please don't pass, please don't pass....Of course, diapers I could do without!!! Must be a boy thing...this little guy does #2 ALL the time!
So college sure has changed! You know they have these computers all over the campus...just sitting on the tables and anyone can hop on...just type in your password, and you can do your work, send email...they are EVERYWHERE! These kids don't have to ever step foot in the library, or know what the dewey decibel system is, never mind opening up a card catalog. When I was in college I had the Brother Word Processor with the full (9 inch!) screen and that was top of the line! You could actually see like 4 lines of text! It was amazing...if I packed up my corded remote control and my corded phone (yes, some of them still had rotary dials!), I was all set. If you ran out of money, you actually had to wait for your parents to send it to you, through the MAIL (you know the little white trucks)...stamps were probably like 7 cents..(do you know I just looked for the cents symbol on my keyboard and there isn't one!!) You could order a pitcher of beer for $5 (not sure if that's a good thing)...Anyway, I did well on my first test (I've still got it!) and it has been interesting. 1 night is perfect...and I am really really using my brain.
Abby is just doing amazing....we get further and further away from her diagnosis and closer and closer to treatment completion. Her prescriptions are still tough but the medical expenses have slowed down (shhh I know I just jinxed a trip to the ER)...I feel like our whole family has not only come up above water, but we are now swimming! And almost ready to go without floaties...not quite yet, but close! I am working more and trying to pick up extra things as much as possible; I am extremely lucky to be in the field that I am in...I finally feel like I can just breathe, and I can manage my family...it felt so disorganized and out of control for so long; I cannot explain how much you don't realize until you aren't right in it anymore...so much just seems like a blur.
I chaperoned (that is such a funny verb to use...I never thought of myself as a chaperone...when I did Kindergarten screenings the other day, the test referred to me as a "Language Operator" and I thought that was pretty cool) Abby's Brownie encampment...I know it sounds like "entrapment" but they call it "encampment"...see everything has gotten fancier...it used to just be "camp" and "CCD" is now "Religious Education"...I found that out the other day too...anyway, back to "encampment"....we had eight 6 & 7 year old girls....they had a blast but WOW, remind me not to have any slumber parties...(Oh and thanks Mom and Dad for the slumber parties!)...Abby didn't stay the night, I just wasn't ready for that...I was the only one but that's just what I was comfortable with for now so I took her home after the campfire...she fell asleep in the car...even though she's been so strong and healthy, I have to remind (yes, can you believe it isn't always at the forefront of my mind all the time anymore???) myself that her body is weak, and her immune system is week, and she still needs a little bit of protecting...
Caroline is adjusting well to her school...she doesn't want to go and then she doesn't want to leave...I've learned that I need to plan and extra half hour for anything that involves her...she will inevitably have trouble finding her shoes, or find a few flowers or weeds to pick on the way to the car, she'll stop and see a shiny rock and just have to have it...that's my Caroline...she's a "Stop and Smell the Roses" little girl and I continue to learn so much from her.
September 18, 2008
So you can see I finally got a disk of pictures over to Graham for the website and I apologize for how old they are...so let me catch up...obviously our amazing wonderful magical trip to Disney! The chocolate covered strawberry, windmill house, and carousal are all from the "Give Kids The World" village where we stayed...the entire place was filled with larger than life sized popcorn containers and ice cream sundaes...a child's dream...Abby and Michael's birthday are mixed in with our annual trip to Wells Beach and Abby's first day of 1st grade...there is a picture of stars on a ceiling and that is also from our Disney trip...each child who gets their "wish" puts their star up on the ceiling...it's really quite breath taking to see but also a little solemn when you realized all the stars and why those children were all invited to be special guests.
There is also a picture of Abby at clinic with Becky, so very special is Becky. I am so sad to report (but VERY happy for Becky) that she has left UMASS to pursue a career closer to home...this girl was so dedicated to what she did that she commuted over an hour every day to do her job...taking care of sick children while the medical professionals did their thing...taking the load off of the parents...I cannot put into words how truly special the child life specialists are and what they mean to parents of a sick child. To have that one person that Abby could look forward to seeing, someone who wasn't going to poke her with needles or give her medicine or ask her all kinds of questions about her health...someone who read stories and played games and did arts-n-crafts...someone with an endless supply of activities...someone who always smiled...someone who was there for Abby...Becky was with us from the beginning and she will be missed but never ever forgotten and always, always in our hearts.
I failed to mention another, yes ANOTHER act of kindness...Last week while I was upstairs with the baby, John called up to me to tell me that someone was here for me....by the time I got downstairs, all I saw was a car driving away so I just assumed that someone was turning around in our driveway...John didn't recognize the car so he just thought it was someone for me and he never saw whoever it was...but...when we opened our door, we saw the most gorgeous grouping of mums! They were just beautiful!! Put the biggest smile on my face...I just love this time of year and nothing marks it more than the mums and the pumpkins, and the rich autumn colors...just puts you in such a good mood. So whoever you are...all I know is that it was a gold car (anyone???), thank you so much...what a thoughtful thing to do! They are stunning and I smile every time I walk up or down my front steps...which is saying a lot because our front porch is peeling with paint and kind of dark and dreary...NOW they are bright and cheerful!
My little Caroline started preschool this week and she was just so precious! The first day, she just ran into the school, holding her lunchbox (that she had been carrying around for about an hour prior to)...when I asked about school later, all she said was, "Mommy I made so many new friends today"...isn't that all you really want for them? Of course, 2 days later, I had to peel her off my leg and then stay for a half an hour before she would let me leave, but I had such a nice time...it was really quite magical...really...I sat there and watched these little girls all in their dress-up clothes sitting around Mrs. Craffey, playing a game...there was no whining or crying or fussing...just a calm, peacefulness...you know, it was just one of those moments...when everything feels right and time stands still...
Then I went home and my baby brought me a screwdriver in one hand and a pair of scissors in the other and all I could think of (besides the fact that no one reading this will ever let their children play at our house) was, Where did he find those?...we can NEVER find a screwdriver or scissors when we need them....we also discovered that Michael has a stash in the house...a place where he can put his very special things...we discovered it after we spent an entire morning looking for one of Caroline's new school shoes...after getting sooo mad at her for not putting them in the "shoe area" (now I have organized just about everything in my house so that this should be sooo easy for them), we found her shoe in the top drawer of the file cabinet in the computer room...with it were a few goldfish, some cheerios, a couple of pictures, and some other odds and ends...yes, we discovered Michael's collection. Did I mention that he has 2 parents and 2 sisters supervising him???
September 13, 2008
Wow...where do I begin??? I took too much time off from my writing and have so much to say...I usually think and talk chronologically but I think I need to go backwards right now...Yesterday was my husband's 35th birthday!!! And we celebrated it by barely acknowledging it at all and participating in the Abby's Angels 2nd annual golf classic, organized by the one and only Big Grandpa! An unbelievable thanks, AGAIN!!! to Steven Thurston of Lunenburg and Best Buy for making the event such a huge success, thanks to the stores who donated some incredible prizes and all of the golfers who took time out of their work schedules to attend the function. Thanks to Barry Call for spending the WHOLE day as Big Grandpa's right hand man, and with a smile the entire time! And Dayna, your presence and friendship is always such a huge source of comfort for me...thank you for listening to all of my babble over and over again!
Abby had a blast...she would drive in a golf cart all day if she could....I cannot believe how well she did! It was Friday of a steroid and vincristine week and she only whined once during the entire tournament (sorry Mr. Z...it came when she was supposed to hop in a picture with his golf team) but that is amazing for her...she usually melts down quite a bit during this week and it just didn't happen...I am sooo relieved!!
Another milestone in our family was John and I having our 9 year!! wedding anniversary...again we barely acknowledged it but it was there, underneath it all....9 FULL years but mostly happy and definitely the way I want my life to be...so thank you John for being a wonderful husband and father and for listening over and over again to my babble (how many people do I have to thank for that??? Oh, everyone who reads this...thank you over and over again for reading my babble :)
I started taking a college course this week...very interesting...my hospital pays and I am pretty sure I'll be in for a career change or addition sometime in the next 10 years so I might as well start slowly...so Anatomy and Physiology it is...1 night a week for 5 hours, including a lab! I was very apprehensive, mostly about sitting there for 5 hours but also having time away from home and all of that...but it was actually kind of fun! I realized how comfortable I am in an academic setting and I enjoyed the Q&A of the lab....I found myself looking forward to future classes and it felt good! I also realized exactly how old I was....College has changed since I left grad school just 13 short years ago...first of all, everything is online and apparently I was the only one to NOT look anything up before the class...Everyone else had power point presentations pre-printed...Then the instructor kept referring to her postings on the "Blackboard" and I kept looking up at the blackboard but there wasn't anything there...apparently, the "Blackboard" is an online resource with all of the course materials, graphs, etc...OHHH!! I don't even think they make chalk anymore, unless it's 1 inch thick and 5 inches long and for your driveway...then my lower back was aching about an hour into the class...I am quite certain that my back never ached in grad school...so then class ended and I had to go to my car in the parking lot...well it was soooo dark...I made a mental note to call the school in the morning and complain about the lighting in the parking lot...it just wasn't safe...Now I am also sure I never noticed the "safety" issues the last time I was in college...so it should be pretty interesting...time will tell.
My little sweet Caroline is just flourishing! I know it's been a long year for her and who knows how all of this has effected her...but I have gotten so much quality time with her lately and I have been able to sit back and observe what a nice little girl she is! I took her to her preschool orientation and she just ran there!! She was so excited and talked with everyone and introduced herself to the other kids..and then she sought each teacher for a hug when it was time to leave...she was really quite adorable and I am so proud of her....she had previously been very clingy and just not ready...Boy when they're ready, they're ready....
September 4, 2008
I wonder if the mosquitoes know she has Leukemia? She got eaten alive yesterday afternoon. She had bug bites all over her back and all I could think was "ha ha" you picked the wrong girl to take blood from! She has blood cancer and you just received chemotherapy!
She is doing well with school, adjusting nicely...it seems so funny to me that we spend good money on car seats and booster seats and make sure they are in properly and never leave until the kids are buckled...we research any possible day care provider situation beyond thoroughly...we don't let them play outside by themselves in their own backyard...and then one day, SUDDENLY, you jut put them in a big bus with no car seats, no buckles, you have no idea who the other kids are, or the driver for that matter, and send them to a big building with more strangers...all this with just a wave and a "goodbye I love you"...they pretty much go from the womb to the bus in 30 seconds!
I watched my little niece Meghan get on the bus today for her first day of Kindergarten! The last one to go for the McCarthy's....so sad and happy! Caroline will be in third grade before Michael goes to Kindergarten....I just had to have that third baby.....
August 31, 2008
"Caroline-isms"...that's what we call them...she has her own little language and if you don't know the context it can be quite an adventure...yesterday, I was sewing (for the second or third time ever) a button onto a shirt, and she tells me, "Mom, Mimi is the best sweater, isn't she?"....NO idea..."Yeah, are you sweating, now?"...I look at my arm pits and take a whiff.."I don't think so"...."Oh", she says, "are you sweating that button"...OH!!! Then I realize she has combined "threading" with "sewing" to create her own word....Then this morning, she was having her flouride and she tells, me.."Flouride strongs your bones, right?"...She has some verb tense issues for sure...."yes, Caroline, it strongs your bones"....
Abby got her earring stuck inside her earlobe...I was a little freaked, I've got to say...her earring are so small that the actual earring part sunk into her lobe and I could even see it through the hole. She panicked completely and wouldn't let anyone touch it and I thought for sure we'd have an ER visit and a raging infection. After A LOT of kicking and screaming, she allowed me to put EMLA cream on the spot. She was very difficult to re-direct for the 40 minutes it took to numb the spot. She was just beside herself with fear. Finally, when the area was numb, I just held her in my lap and pushed...I was so scared that she would end up with one of those big holes...you know the ones, you see teenagers in the stores with the big open black rings and you think to yourself, "No way is my child ever having one of those"...and you hold your own ear and walk away thinking about how uncomfortable that must be, never mind the tongue ring...But the earring came through and I just breathed a sigh of complete relief....
I just don't get it, I tried to explain to her that this was not as bad as giving blood, accessing her port, or having a spinal tap and she doesn't cry for those...the little things bother her more.....
Have a happy, healthy, labor day weekend and get that last bit of family time in!!
August 27, 2008
I am already exhausted with the new school year and all I had to do was say "goodbye" and "have a nice day!" Abby packed her own lunch, made her own sandwich, and picked out her outfit and had everything ready by the door...independence is an amazing thing...happy about the 6 year old having, not as happy about the 1 year old having it :)
I know I say it all of the time but Big Grandpa is amazing! He took 5, count them 5, of his grandchildren to the gym yesterday so they could run around and play...he thinks nothing of loading them all up and taking them to McDonald's playland, the gym, errands, Hannaford (yes, we know, my favorite)....that would just stress me out but he does it! Thank you Big G!! They love you and I wouldn't want it any other way!
Abby is adjusting well to her new class...she talks about how different things are in 1st grade..."in 1st grade, you don't put your bag on your hook, you walk to your desk and take your things out...in 1st grade, you have a desk", etc, etc...it's quite adorable! Other than the "rules" of 1st grade, I haven't gotten much information from her..."I don't remember"...she remembers the amount in the heparin syringe at clinic so I KNOW she remembers what happened at school...I'll always need a spy on her to find out what happened during her day....
The new picture of Abby is one of my all-time favorites!! Thanks to Joanna of Photography by Joanna, again, for your amazing work! She looks healthy and happy! And she is!!!
August 24, 2008
I just sat down to write an update and Caroline comes in to the computer room very calmly and says, "Mommy, have you ever seen a baby outside before?"...so I ran! My little baby opened the garage door and ran into the driveway!! This little guy is unbelievable! He opens the refrigerator and climbs the shelves in it, he climbs the stairs to the top, he can open any door or drawer...WOW!! He is not even 14 months old yet....he LOVES his grandpa...when I go to my parents, I just put him down right when we walk in the door and off he goes...looking for his grandpa...he passes the computer room and peers in quickly, doesn't see him, and keeps going, even past Mimi....until he finds him...then he grabs Big Grandpa's legs and hugs...it's adorable...and Big Grandpa, of course, eats it right up! Isn't that what grandparents are for??
It's been tough seeing the way these drugs effect Abby's body...she can't snap most of her pants and her belly is hard and enlarged...it's just sad to see...you shouldn't have to worry about a 6 year old's body image..but I do..she doesn't care but I know that kids can be mean even as young as first grade. I also started to see some small bumps on her face that look like early acne...I will just die if my 6 year old has to deal with that! I am going to call tomorrow and see if this is typical with the steroids, those *$%#!, oh I mean AMAZING, pills....do your job steroids so my daughter never has to take you again!!
And to Robin, you put the biggest smile on my face! I laughed out loud (and I had just seen you, oddly enough)! I have to admit I was a little embarrassed about my grocery store rant (sometimes I just sit and type and don't edit) but it's how I feel...I just love my Hannaford! Thank you Robin, for putting a smile on my face, but also for your kind and generous thoughts and gift! I will actually be going there this morning to refill Abby's prescriptions, so thank you for helping contribute to the steroids :)
August 20, 2008
Abby went for labs on Monday and Caroline came with us...they were both very good and everything went smoothly! We got the results later in the afternoon and her counts were up so she was able to resume 50% of her chemotherapy. The timing for everything is good because Abby will have 2 weeks at school before another Vincristine/Steroid week...that is a relief! Let's hope this is the last "beginning of the year" timing issue for Abby...let her start 2nd grade medication free!!
She and Caroline have been in sync the past week (figures...just as their schedules will chance)..they have been playing like they used to....no fighting, LOTS of pretending, great stuff!! On Monday after labs, I took both girls to Payless and Walmart and they picked out their ballet shoes, skirts, and leotards...the stripped in the car and put them on right in the parking lot...they were just so cute! They will both be participating in a dance class this year...Abby looks just like me...clumsy, heavy footed...nothing dainty about her...but adorable as can be! Caroline has more grace...it'll be fun to see how they dance. Abby no doubt will watch everything the teacher does and try to copy it exactly. She will think about every move...Caroline on the other hand, will hear the music and just respond (will probably need cues to attend to the teacher)...sooo different!!
Yesterday, I was changing Michael's diaper and Caroline came upstairs with a frog...she was so excited and gently let it down to hop around on the rug! I know she is just curious and loves her critters but this was too much for me...I screamed, "Get it outside, now, get it outside now!" (Okay DEFINITELY over-reacted but I am not a creepy crawlers kind of mom---they can learn their science at school)...She just said to me matter of factly, "Mom, frogs are good"...yes, they are, outside and in their own habitat....So, I thought she had put it outside....low and behold, this morning I went to put my lunch in a tupperware container and there it was; lid on and all...DEAD! soooo completely gross!
August 18, 2008
God bless the fifties mom! I can't imagine getting up every day, putting on my pearls and an apron, and cook 3 meals, one of which likely included some sort of roast...and then turning around and doing it day after day....at least she had milk delivery...but no microwave!!! I feel like that's what I've done for the past 4 days, cook, clean, cook, clean....when Abby is on the steroids, it is like feeding a new baby, except with food. She eats all day and I just get so tired of feeding her; it's constant. But she got through another week, still a little cranky but okay...we'll go for labs today to see if she can resume her chemo...I hope she can because it just seems as though she's had quite a few decreases or breaks and I just want her to get all that she is supposed to get...it's strange not to give her meds...last night, I just put her to bed and had nothing to give her...I felt like I was forgetting something.
Only a week and a half until school...I feel so good about Abby going to school this year...sooo different than last year's experience. Last year, I tried to find as many hats as I could for her and I worried about so many things...but after she had the most wonderful Kindergarten experience, I know she is in good hands and that she is well cared for when she is at school. Hopefully she won't miss as much this year and let's pray for no fevers!!!
August 14, 2008
I hate the steroids, I hate the steroids, I hate the steroids...have I mentioned the steroids??? We went for a playdate this morning and she has been crying off and on ever since we got home...she is just miserable! I probably just need to change my work schedule..I used to think that John had the worst of it because clinic is always on a Monday and he is always home with them on Tuesdays but now I think that the end of the week is the worst because the steroids have set in! On Tuesdays and Wednesdays, she usually just doesn't feel well because of the medicine but by the end of the week, her mood is just awful!!
And these Olympics have to end! I am up sooo late watching them...I just can't help it; it's amazing the commitment that these athletes have, it's really incredible!
School is just around the corner...WHO exactly is designing children's clothing??? I've been to Target, Walmart, Old Navy, Gap, Kohl's, you name it....I just don't get it, all I wanted for Abby is ONE pair of comfortable jeans and they just don't exist...she is 6 and on the higher end of the growth chart for height and weight and the jeans in her size are at least 3-4 inches too long...WHERE are they getting the measurements for the sizes??? It was so much easier when you could just throw a sun dress or a onesie on them...My baby boy has barely seen an article of clothing yet...he doesn't even know how to wear shoes...you put them on him and he acts like you poured a bucket of cement over his feet...it's actually quite cute...
August 11, 2008
Amazing how just one little visit back to UMass and all the memories of the beginning come flooding back. It was a LONG day but really good in terms of Abby:Mommy time. She is just an enjoyable little person to be with! They had trouble accessing her port but with the help of 3 nurses and a longer needle; they were in...Abby was sooo tolerant! As usual, she also tolerated her lumbar puncture very well....there was a medical student (okay, they are like 13 years old now!)observing and they kept telling him, "They aren't all like this...she's special"...of course, I just beamed. A mother's pride....my daughter tolerates the lumbar puncture medicine better than most...that's happy news for us but I can't imagine being a mom and NOT having your child rest comfortable while they puncture your back; I can't even fathom having that experience over and over again...we are lucky. The worst it was for us was in the beginning when she had her first (and diagnostic ugh!) bone marrow biopsy, she slept through it but woke up terrified and crying for me...it seems like ages ago. One time during her puncture, she yelled out a single "OUCH!" but that was it...so I have to say, we've been pretty lucky for sure.
The bad news today is that Abby's counts (ANC) were very low (300)...under 500 is considered neutropenic and during Maintenance, they like it to be in a range of 700-1500...this is the count that amazingly enough was 3000 2 weeks ago so we raised her chemotherapy back to 100%. So this means that she will NOT get any oral chemotherapy this week; she'll just have the spinal chemo and port chemo that she got at clinic today and have the steroids all this week...she'll go back next Monday for labs again and hopefully, she'll resume chemo again....I just want her body to be strong and resilient to begin 1st grade. I wish her 2 good weeks in a row so she can adjust to the new year...
August 10, 2008
I keep trying to branch out to other grocery stores to save money but it is SOOO hard! My mother has always gotten the sale flyers and written down what each item is on sale where and travel to each place to get the best deal and I always thought she was crazy...I mean, how much was she really saving? Now I am a good shopper, I know what everything costs where and where you can find what...but only for house decorations and clothes, not groceries...but it's time for me to figure that all out because you spend sooo much on groceries!! I know that when I get a full cart at Hannaford and a full cart at Market Basket, there is a HUGE difference...the problem is that I am a grocery store snob! I just can't stand going to Market Basket, even the new one. First of all, you can't take your kids because they don't have any of those cool car carriages...also, it is always so packed that you can't possibly drive your cart down the aisles so if you brought you kids and sat them in the cart, you couldn't leave the cart, and now you have no room for your groceries because your kids have to sit in the cart. And it's just not a friendly place; it's busy, crowded, and I just have to vent every time I leave there...is it worth the stress? The other thing that bugs me is no matter how much I manage to fit in one cart, after they bag it the put it in two so I have to drive 2 carts to my car. If I can fit it in one, why can't they?? So yesterday, I decided to start trying my mother's plan and Shaw's was having a fantastic sale on Kellogg's products which includes the cereals and snacks that are regulars at my house so I decided to go there on my way home from work. I have never really liked Shaw's either but I thought, if I am going to make changes I have to be open minded. So I go and select ONLY the things on my list and go to pay, and she says, "May I have your Shaw's card?"...WHAT!!!??? WHY do I have to have a Shaw's card...so asked her "Why" and she said, "Because you won't be eligible for the sale prices?"...I said, "So you don't offer your sale prices to the general public?" That is just crazy! Now I know it is no big deal and I filled out the form but now I have ANOTHER card to have to carry and keep track of...but I was so mad about it...I just don't get it...why do you need to have a card at these places (YES I have a husband and retail who explained the whole thing to me) but I just don't get it. You can't pay with a check at Stop and Shop if you don't have a card, you can't get the sale price at Shaws if you don't have a card, you don't have good store transportation at Market Basket, Trader Joe's is 40 million miles away...so my happy, clean, good carts, short lines, friendly Hannaford, why do you have to be so expensive?? I think I've answered my own question.
So now you think I'm crazy...why am I so set off by this? My daughter is surviving cancer and I am complaining about the most trivial little things...it's just a vent but it's human. Sometimes the "little things" just piss us off even when we know there are bigger fish to fry.
See, now out of my system, I can feel the joy....we went blueberry picking earlier this week and the kids just loved it. They went with their cousins and auntie, of course, and you should have seen the size of these blueberries! Caroline ran from bush to bush, very dramatic with a twinkle in her eye and a dimple in her cheek, "What a beauty!!" and "This is the biggest one in the whole wide world!!"...Abby was very methodical about it...counting the amounts and trying to plan and figure out when we would be done. Michael just sat in his stroller and made the biggest mess you could imagine. (Speaking of Hannaford...) On the way home we decided to have Meghan come and play and just as we neared Hannaford, all 3 girls were desperate to go to the bathroom...I thought we could make it home but at this point, Meghan was crying so I had to make a detour. Well, wouldn't you know, the extra clothes I thought I had for Michael were soaked so I had nothing but a diaper for him. The time bomb was ticking, there was crying and chaos..so I just grabbed him in just his diaper and went into the store with all 4 kids. I was horrified...we had blueberry stains and a half naked baby but if we were going to make a pit stop to pee, it had to serve a dual purpose; we were going to get the fixings for muffins and pie. The cashier (maybe in his high teens) just looked at me and said, "Are these all yours" and I was like, "Oh God no" but then thought about it and said, "Well 3 of them are..." He said, (and he was serious, not sarcastic), "Kids are so fun at this age"...WOW! If he could see that, I needed to step back and smile...they ARE fun at this age...challenging, crazy, irritating, but yes FUN, would be a way to describe it. So if you were there that day, I was the crazy mom with 3 loud little girls and a naked baby on my hip, buying milk, eggs, and pie crust. Someday I'll stop in the grocery store finely manicured and coiffed, without stains on my shirt, but it is not my time..and I'm okay with that :)
Yesterday was a picture perfect summer day at the lake. Abby is beginning to get upset about the whole lake thing but Caroline needs to have a day there...she is an outdoor plant (as Audra says) and Abby is more of an indoor plant. Caroline is a different person when she is able to go there...she puts on her life vest and just swims and swims and swims; it's different than a pool for her...there's sand and creepy crawlys and nets...she is in her element! Colby and Colin came and they just had a blast...we used to come every day but since Abby got sick, it just hasn't been the same. Big Grandpa took us all for a boat ride and the kids were so excited...they each took turns driving, even Michael, who basically pushed his way right into the driver's seat with Big Grandpa...he is SO boy!!
Tomorrow is a clinic day.....let's hope it goes smoothly!
August 7, 2008
There ought to be some sort of gerbil type contraption so that your baby can wake up in the morning and just push a button and feed himself...my baby wakes up so hungry in the morning, there is no down time, no "give mommy a chance to wake up time"...I know there'd be all sorts of choking ramifications and law suits but there's GOT to be something. I try leaving some toys and books in his crib but he just throws the out. If we don't go downstairs immediately and have a "yobaby", I will pay! The other thing my little helper does now is turn off my washer and dryer...as if laundry wasn't tough enough to keep up on before! I will throw a load in and then go to put it in the dryer and it isn't even wet yet! He gets to it early...he also lost my cell phone...my fault, I know, blame the mom for everything...I DID let him have it to play with and didn't keep my eye on him and now it's gone, POOF, gone...John took apart the sofas (which needed a good cleaning anyway) and we moved every piece of furniture, checked every toy box, and it is GONE. So I am like a drug addict to needs a fix...it's virtually impossible to drive without it. What did we do in the "olden days"???
Did I mention that I just love him beyond belief?? He climbs on my treadmill, finds my china in the cabinets, bangs on the keyboards, opens my fridge and unloads sesame oil all over the floor (shines laminate woods right up, by the way) but I just love him! He's so gosh darn (and I don't think I've ever said "Gosh Darn") cute!
Caroline's 4s are improving, kind of...it all depends on how you look at it...I had dental work and slept and worked for 2 days so I haven't been around it for the past couple of days, we'll see today. Last night, she was upset about something, and instead of whining, she said, "Oh for goodness snakes!"...I just laughed and laughed...
Starting to get ready for fall, not sure what that entails yet but the feeling is already in the air. Monday is a clinic day, a spinal chemo day...Wow! 12 weeks just flies! But this "back test" will mark 1 more year of treatment! In some ways it's passed by quickly, in other ways, it ANOTHER whole year of chemo and steroids and pill cases and ER visits....
August 4, 2008
Wow!!! I don't even remember where I left off...I think this is the longest I've gone without my therapy...Well, the first thing is (and shhhh...I am only writing this, NOT saying it aloud) but we are all HEALTHY!!! If if omit, routine Leukemia, that is...Michael's ears are clear, I have no "little bugs" or illnesses...it feels great!! Two back to back weeks of healthy Laines! I did have a root canal today and the Vicodin is just kicking in now so it doesn't hurt too badly....When I went to see my doctor last week, I asked him what I could do to be more proactive about my health? Why am I always getting sick?? I now the obvious answers (lose weight, exercise, eat healthy---and believe it or not, I am doing these pretty well, albeit a trip to the Maine Diner for lobster pie on our vacation, and a few choice drinks at the Springsteen concert)..but what can I REALLY do?? My psychologist suggested Airborne but it is really expensive...my doctor suggested Trader Joe's Women's Health vitamins which I will buy when I can get out there...anyways, there's got to be something...all my lab work is good and I am not a frail girl...I've worked in a hospital and in schools my entire adult life so why do I keep getting sick??? I sound so high maintenance, talking about my peeps (my doctor, my psychologist)...I wish it were my plastic surgeon, masseuse, manicurist, wealth manager, nanny...oh well, potatoe, potatoe (is spelled different or just an accent thing???) I am getting the first consistent sleep since Abby was diagnosed and my mental health gets stronger and stronger with each passing month so hopefully physical health is on the way...2009 is the employee of the year year for me!
So we have been busy, taking our annual family trip to Wells beach. It's so cool to see the development from year to year. Abby basically missed out on her summer last year so her independence is really coming through now! She doesn't want any flotation device, is boogy boarding, and handling the ocean like a champ. The kids just had an amazing time! Because of all the storms, the water was actually warm, at least by northeast standards. Abby, Caroline, and Meghan act like they never see each other...they just can't bear to be apart. And as old as my little Matty gets, he's still just sweet little Matty, catching crabs in the rocks and building sand castles. This year was a big one, because Ryan, Matt, and Abby swam out with the big boys, Uncle Sean and Uncle Mike and they caught a lobster! It was so exciting to them...now if they could have caught me a coach bag, I might have moved from my chair...The baby didn't like the beach so much; he's going to be like his Dad..a man from Gloucester who doesn't like to fish and doesn't like the beach...Michael didn't really like walking in the sand and of course, tried to eat it. He cried in the ocean and when I put him down....this was only on the first day though and once he got used to it, he was running after the seagulls...he's just so flipping adorable!! John had fun with his girls, swimming in the pool and playing at the arcade. Wells Beach is such a simple vacation and is all that family should be, simple time together, swimming and enjoying the sunshine...it was just great! Short but great....I actually read a book, a WHOLE book; a Mary Higgins Clark book, not a parenting book, or a kids chapter book, a grown-up book written for pure entertainment...it wasn't educational, thought-provoking, or self-help...I loved every page!!!
To top off our short 3-day vacation, I got to escape with my brother and see Bruce Springsteen at the Meadowlands in E. Rutherford, NJ...now it was great to spend quality time with my brother; I miss him so much since he's been in Connecticut and when he comes home, his time is usually consumed by his visiting and playing with his nieces and nephews, catching a movie with John, fishing with friends, or helping our parents...rarely is it just him and I so it was great to do that...thank you John for being a great dad and husband and giving me that opportunity! This concert was the best I'd ever seen and I've had my share...Pearl Jam, Dave Matthews, Aerosmith Guns-n-roses, Billy Joel, John Cougar Mellencamp, Vertical Horizon, just to name a few...Bruce and the E street band were at their best...TONS of energy, TONS of songs, and my 2 favorites (No surrender and Thunderroad)...it was great!! I know I sound like a nut, I really don't even listen to him that much and don't have a poster on my wall or anything strange like that (if I did have a poster it would be of the FBI agent from Without a Trace, Danny, I don't even know his last name but ooo la la!)..there's just something about a Bruce concert...makes me happy!
On another note, my dad is starting to organize the second annual Abby's Angels golf classic...there will be information posted on the events page in the upcoming week if you are interested.
There will also be new photos coming soon...I almost have a disk ready to give to Graham to update the sight...it should be done by the end of this week and in his hands...some GORGEOUS (if I do say so myself) pictures of Abby (compliments of photography by joanna), some from Disney, and some from Maine...Abby's hair continues to grow but right now she just looks like a kid with a bad haircut. I know it's vain but it still bothers me...now I am MORE than happy that she doesn't look like she has cancer any more but at least you knew why her hair looked so bad; no she looks like she has a mother that has no clue (which can absolutely be contested)...
I can't believe it is August, it's already time for me to start planning for fall...I'll need to work a lot more so it will be a big change for me but we'll adjust. Abby will go to 1st grade...Ugh!! And my little baby Meghan will be off to Kindergarten...so fast, so fast...before you know it, I'll be bringing Michael to college!
July 20, 2008
So what was I saying about Michael being my one who will have all of the "minor" stuff??? So now he has a rash...it started behind his ears and around his hair line and then it spread to his trunk...I called the doctor, thinking he might be allergic to the amoxicillan (wouldn't it be great if I had to buy a third antibiotic??) The doctor didn't think it was an allergic reaction because it wasn't hive like but he thought it might be a viral rash??? So anyway, I have to bring him in today because it hasn't gone away.
The girls are practicing right now for Halloween...they are dressed up in costumes and have their little pumpkin bowls...it is really cute...a little disheartening that they are rushing the season but cute just the same.
So a little story about Uncle Sean and what a good guy he is...he comes home this weekend to visit a friend who is in from LA and he "stops by" to help John move an aluminum pool deck over to the pool area. (I got this deck on craigslist for $50 and thought it would just get us through a few years until we could make something a little nicer)...anyway, we get the deck over to the pool and realize that it probably isn't going to work; no biggy, I'll just re-list it on Craigslist...John had to sleep for work anyway..but Uncle Sean decides he can make it work; he'll just run to the hardware store and get some 2x4s (not sure of what he really needed; may as well be Latin to me) and use the top from the aluminum deck and just make a deck for us...it was about 98% and HUMID yesterday...that boy worked his butt off digging holes and taking things apart(along with my 60 year old dad who wouldn't leave no matter how much I tried)....anyway, what a nice thing to do (it's not done--he's coming over today)! Thank you for always being so positive Uncle Sean! It's contagious!
July 19, 2008
We survived another steroid week! Abby didn't feel well last night and her stomach is bloated again but overall, not too bad...Michael feels better, although he woke up with some sort of rash and I'm not sure what that's about...he's going to be my child that has all of the "little" stuff like ear infections and rashes and fevers...the girls never had ear infections and barely ever had fevers...anyway, I just love watching him tool around in the morning...you have to wonder what goes through their little baby minds...I think it's something like this..."When is my mother coming to get me out of this crib? I have been yelling to her...oh great, here she comes...I really need to get downstairs because I have A LOT to do before my morning nap...I have to eat and then open some cabinets, take out some glass ware and bang it together, once that's done I need to go check out the washer and dryer and see if they're spinning...THEN I still need to open and close the living room doors a few times, open the refrigerator and take out a few of the lower items...phew..by then I should be plenty tired and ready for my nap"....That's pretty much his routine...He's growing too fast...OH and OFF the bottle....we successfully did it 2 weeks ago, cold turkey!!! Very proud!
July 17, 2008
Whew! What a week! Abby had clinic on Monday and Auntie Kerry took her...what a treat for Abby! She seems to keep track of these things and flat out asked Kerry, "Auntie why haven't you taken my to clinic?"...So Auntie Kerry and Abigail Kerry got to bond together...it really is that way when you take her...she knows the ropes and likes to play games...The problem with Monday is that I discovered that I had made a terrible error with Abby's medications this past month. Instead of getting 7 Methotrexate tabs on Mondays, she had only been getting 5. Now it doesn't really sound like a big deal but her ANC (Absolute Neutrophil Count) is supposed to be between 500 and 1500 during Maintenance so that no clone Leukemia cells can form...this number is low as far as your immune system goes but it is good for Leukemia. Anyway, Abby's ANC jumped from 3000 to 4000 this past month and I just couldn't help but think that it was because of my medication error...and I couldn't even figure out how I made the error. Usually when I make a mistake, I can look back and figure out how/why it happened but I cannot for the life of me figure it out. Usually I sit with the medication calendar that they print out for me and put her pills in her "am" and "pm" containers for the week...I guess it just became routine and I didn't realize that she had been increased. Anyway, that's all I thought about all Monday night...what if her Leukemia comes back and it was all my fault??? Fortunately, they are WONDERFUL at UMass and the NP explained everything to me on Tuesday when I called and reassured my over and over again that this will not negatively affect Abby and that many kids are only able to tolerate 50% or 75% for the ENTIRE maintenance period. She told me all about the counts and how they work and the goal of the chemo, etc, etc...so I felt much better...but it was eye opening, just 2 little pills in a little girls life...VERY important. Abby continues to be SUPER emotional and sensitive on the steroids and I just can't even stand it. When I call home from work, all I hear is her in the background, crying, "mommy, mommy, mommy"...it just breaks my heart. So then on Wed, Michael had his 1 year "Well" visit and I put that word in quotes because I don't think it is possible for any of my children to have a "well" visit...the whole term is just one giant oxymoron for us...The doctor discovered an infected sore on his toe and she needed to use an exacto blade to slice it open to release the puss and culture it...this was after his finger prick for the lead test and 2 shots in the shoulder. I felt so bad for him...then last night, he developed a fever of 104.5...he was up and on my chest for most of the night (I can't say I really minded but I am kind of done with repeats of Frasier episodes)...he was still hot this morning so I knew it wasn't because of the shots and I feared that the infected toe might be worse...long story short (another oxymoron for me!), I took him back to the doctor and he has 2 ear infections! So now, I needed to discard the antibiotic for the skin infection (that I just purchased) and get one for the ear infections...in all of this, my teeth started acting up again so I needed some prescriptions. $75 worth of co-pays and $100 of prescriptions in a day and a half! I bought airborne at the pharmacy last night and joked with the pharmacist that I didn't want to see her anymore. The "LAI" bin is always full.
BUT at least we live in a country where we have access to these medications and the ability to treat all of these things. I think about that all the time...it seems so complicated and stressful sometimes, but I live 5 minutes from a pharmacy, 15 minutes from my doctor, 30 minutes from a major medical facility...and this is all in the little tiny town of Lunenburg! Can you imagine living in some rural area in the Midwest or Appalachian mountains and having these issues? Or in another country, where a woman couldn't even show her face in public or simple antibiotics or vaccinations are an extreme luxury??
So all is "well"; very interesting word...1 more day of steroids and then only 13 more months!
I did start to ask some questions about Abby's Leukemia that I wasn't really interested or ready to ask before. The "cure" rate of childhood ALL Is 85%...that number never really meant much to me because first of all I saw it as a straight "B" and that was never good enough for me and second, because I saw it as 15% are not cured...so I only thought of Abby as an individual and not part of those statistics. Anyway, I guess I was ready because I needed to know...what happens if the Leukemia comes back? What happens to those 15%? The answer is long and complicated but basically, the Leukemia could come back at any time but the further Abby moves away from her first 6-8 months of treatment, the better the prognosis becomes. If they see anything in her labwork to indicate a recurrence, then they would immediately test the bone marrow and then she would repeat the 2 1/2 years of treatment...if that isn't successful, it would go to a bone marrow transplant...so while it all looks grim for that 15%, there are still viable, successful, treatment options...just long and sucky and still with risk...anyway, she is NOT going to be in that 15%...in this case, I want my daughter to be ordinary, in the norm...in all other aspects of her life, I want her to shine and stand out from the rest....
Thank you Auntie Kerry for spending the day with Abby...I was lucky to have some time with those wonderful, growing boys...what nice young men you are raising! I am proud to be their auntie.
July 14, 2008
I've been told by other experienced mothers that they are the "F---You fours" and I really cannot think of a more appropriate term. I remember when I thought the "terrible twos" were hard...that is such a joke...the "twos" are nothing! So they cry a little and can't quite communicate everything they need to...NBD!! NO BIG DEAL! The "fours" are complicated by an extreme case of whining, testing limits, talking fresh, and just plain not listening....What is a mother to do?? They don't act this way for their fathers...all the fathers that may read this are probably saying something to themselves like "it's because you let them get away with stuff"...don't you just want to sock them...I love you dearly John but this is just the way it is! I counted the other day, how many times I needed to say, "Caroline put on your floaties...Caroline put on your floaties...Caroline put on your floaties"...No response...and then this response, "No, I am not going to"...Now my sweet sweet little Caroline surely tests me but she is still my sweet sweet Caroline so why does she behave this way? Now I count to 3...1...2...3...and what do I think will happen at 3? I can't get out of the pool to enforce my discipline because I can't leave my little baby in there...by the time I get him out and make my move, the moment has passed and it just doesn't have the same effect. I remember another experienced mother telling me (way back and I filed it somewhere in my brain) that when she "counts" she never even gets to 3. I remember asking her, "what happens at 3?" and she said, "I never get to 3...it always works"...Well it doesn't work for me...I always get to 3 and that's with a 2 1/2 AND a long pause with my fingers up in her face...I ALWAYS get to 3...So I've resorted to carrying her up to her bedroom for a "time out"...do you know how heavy she is?? Again, why aren't I skinny? For a long time, I blamed myself for the behavior because last year was so hard on us; we just couldn't discipline consistently but now I know that this would exist whether Abby had Leukemia or not. How do they learn the "fresh talk"? Caroline got so mad at John the other day, she called him "Poop". We both had to bite our tongues from laughing and needed to address the seriousness of the situation. We NEVER go around calling each other
"poop" or "poopy head" so how does she learn that?? All we could do was tell her that she was using potty talk and it wasn't a very nice way to talk. She said, "sorry" (she always does) but I was left thinking, I can't wait for 5...5 isn't so bad, right?? I've never heard them called the "F--- You fives"? Right?? Please help me on this one. I don't want to wish this time away, I was sooo looking forward to the next year with her..it will be the last one before she goes off to school everyday...and before you know it, I'll have forgotten all about the "F---You Fours" and I'll only remember the good things and I'll probably say stuff like, 4 was easy...I don't remember having any problems...she was just so sweet...
July 9, 2008
It was a wonderful holiday! We went to the Pepperell parade, we went to the lake, we saw fireworks from Big Grandpa's boat...it was just like life is supposed to be. I was still feeling sick and am finally feeling better. Abby was a great sport about the lake, which is a good thing, because Caroline literally spent 5 hours in the water and I would hate for her to not be able to do that. The baby is tough because he is everywhere and into everything but can't quite maneuver the sand and the steps so I have to be completely "on guard". Much different from last summer when he just slept in his infant carrier. He has a really bad case of conjunctivitis so I have to stay home today. Conjunctivitis has to be one of the most disgusting things...just goop coming out of his eyes and then he wipes it and it sticks in his eyebrows and hair, it is just plain gross! Thankfully, he has kept it to himself and we haven't caught it.
So what are we all going to do about the oil????? I just got my contract to pre-buy and it is DOUBLE what it was last year!!! It is so crazy, gas and oil are out of control...so many people are just going to have problems this year for sure. Luckily (it's all in how you look at it), our children sleep in our room so we can just heat that one room...no need to try to get them out now :) Might as well wait until they're teens....
July 3, 2008
My favorite holiday next to Christmas...have I mentioned that I love the 4th?? I love BBQs, fireworks, parades, watermelon, and the good old red, white, and blue! Just love it! Love seeing the American flags everywhere, love families and friends getting together, love the whole GD thing!! It would be a little nice to have some good weather...anyone else get pelted with hail yesterday??? I thought I was going to get a head injury...it came down just as I was going into the dentist. The kids are good, I had been just a little mean to them the past few days...just wasn't feeling well and had had it with the whining! From now on when I refer to whining, I want to to mean Napa Valley!
My little guy learned to wave...this stuff just never gets old. These little developmental milestones...they just happen and then "poof" it passes and it's no longer a big deal.
June 30, 2008
OMG! I am finally upright and feeling somewhat okay...whew!! What a long past few days! I had some sort of GI bug or salmonella or something. I am seeing the doctor this morning and will find out what he thinks....thanks "AGAIN" to my amazing family for helping us out. Abby and Caroline had a blast at Makenna's birthday; so sorry I missed it. Thank you Audra for letting my "dump" my girls at your house Friday morning---I had no idea what was really coming!
I thought having children was supposed to strengthen your immune system??? I have had more bugs, colds, etc in the past 6 years than I have EVER had in my entire life and take away the 6, you are talking about 30 years!! 30 years!! I have always worked in a hospital and school so I thought I had been exposed to everything.
Anyway, enough about me...my kids had a great weekend (I think)...John worked all of it so I am beyond thankful that I had help. New week, new day, let's move on and be healthy!!
June 27, 2008
Abby's doing well, no more complains of foot pain and her cough didn't amount to anything, THANK GOD!! We are settling into summmer nicely. Today is Michael's official 1st Birtday! I cannot believe my last baby is one!! No more first birthdays!! He is just the goodest (I know it's not a word but it really does apply here) little guy in the world. He just tools around the house and smiles and is just such a love. He has grown so much!
John and I took the girls to Canobie Lake Park yesterday and it was fun...It was really clean and well cared for, I don't remember it being so nice....I haven't been there in over 10 years so I don't know if someone else took it over but it was really fun! Maybe it's because it was overcast and not crowded, but we had a good time. The girls just get so excited about the rides and it's fun to watch how happy they get.
HAPPY BIRTHDAY BABY BOY!!!
June 21, 2008
Another week of steroids done, another clinic visit under the belt. Abby continues to be very cranky and not feeling well. She developed a cough yesterday and she won't take anything liquid or dissolvable. As great as she has been about her treatment,she is terrified of liquid medication. She swallows 11-12 pills at a time and doesn't bat an eye but she won't go near cough syrup. So I tried Vicks vapor rub...when we were kids, this was my mother's answer to everything...put vicks or a cold cloth on it. So I did both. She's had Vicks before and I (thought...probably losing my memory) that she did okay with it but last night she started crying because of the smell and the taste and she was upset because I made her put a t-shirt on over it and she sleeps in her underwear when she's on the steroids. Anyway, she rubbed her eyes and got it in her eyes and it was just a total nightware....I hat to wipe it all off and let her sleep with a cold cloth on her chest (which got my bed all wet) and blah, blah, blah, blah, blah!!
On a positive note, I just love watching my baby walk all over the house...he's got his routine...first it's the spice cabinet...he pulls them all out and each day chooses a new one to walk around the house with as his personal moracca...then he climbs onto the treadmill (proud as can be) and pulls all of my magazines out of the basket. Then he goes and opens the fridge and takes out the syrup or the balsamic vinegar...He puts the remote control up to his ear and says, "Hi". There is something so special about a baby and all the learning that they do.
Trying to find different ways to cut back, I decided to try cheaper paper towels....BIG mistake...HUGE!! JUST not an option...is anyone else out there as in love with the Bounty paper towel as I am??? I could do commercials...it is one of the things I have to have in my house at all times and panic when we are running low. I can't be in the house all day with the kids without them and they HAVE to be good quality. You cannot skimp on the brand...and what is this nonsense about "half sheets"...for pete's sake, you need a good WHOLE papertowel for almost all jobs!! I haven't quite mastered the "one wipe" diaper change either, I am a 5-6 wipe girl. Even after three kids, I just can't do it...I've been okay with the cheap wipes, though, just can't go without Bounty.
June 20, 2008
It's definitely been more good than bad lately but my tolerance for anything is as low as it could be...I give absolutely no latitude for any whining or crying, I just don't have it in me. I keep thinking I'll get stronger with this but it just isn't happening. Abby goes upstairs at 6:00 and makes me come with her. Caroline comes up too because she wants to be with us but she isn't sleepy so she jumps all over the bed, ties gift bags to my dressers and fills them with things inside my dressers, sings, dances, and does whatever she can do to get my attention because Abby is getting it. This just sets Abby off because she doesn't feel well and I am left with the whining and the crying. I have 2 sleeping bag areas set up in my room but neither is good enough and no matter how the night starts, they both end up in the bed and at some point one of them is crying because they are not right next to me. It's nice to be loved, but this is ridiculous!! Do boys do this???
Abby seems to be feeling okay this week and so far hasn't gotten really puffy but her appetite is absolutely ravenous!! She's been making healthier choices like carrot sticks and blueberries so that's good. She has only complained of bone pain twice so I think that's good. Last day of steroids today!!!
It's strange but it all just hit me again this week, I am kind of in a funk, maybe it's because I went to clinic this week, I don't know. I just read an update of a girl who is in a similar situation as Abby but she's about 2-3 months behind in treatment. She does have the osteonecrosis and has had her steroids discontinued temporarily. Her family had posted pictures of her dance recital with her sisters and I just cried and cried...why does it seem to bother me more when I look at other families going through the same thing?
June 18, 2008
I hate, hate, hate, hate the steroids!!!! I feel like I go along in my nice little life and then BOOM; it hits...as I sit here typing, Abby is screaming at the top of her lungs and has been for over 30 minutes...this causes Caroline to scream and I am about to go out of my ever loving mind!! I tried to go upstairs but they followed me...then Abby pushed Caroline because she is in such a state and we try to discipline her but it is not really her we are disciplining but it is her for about 10 days every month so how are we supposed to handle it?? She is screaming mommy, mommy, mommy, and saying that
her knees hurt but do they? Is it the Vincristine? Is it the steroids? Is it attention seeking? I have no idea and I am so tired of it all; tired of wondering, tired of being strong, tired of dealing with the whole thing. Just plain tired of it....
June 16, 2008
Just got the update on Abby's labs and they look great!! Her ANC is over 3000, I think this is the highest it has been since she was diagnosed!! This means that she can resume 100% chemotherapy; she had been decreased from her slew of ER visits over the past few months. So great!! She gets higher doses of chemo and steroids! Just have to keep in mind the greater picture, which is that her body is strong enough to handle it now and it will give her more fuel to fight off the bad guys...I never thought they stood a chance anyway :)
June 16, 2008
Clinic went well today but it was LONG!! Her actual chemo administration took about 5 minutes but they had trouble accessing her port again and so we had to wait for the surgeon to come in and check it and then he de-accessed it, reapplied EMLA which meant we needed to wait an hour for him to try to re-access it. It worked and Abby was in good spirits but WOW, it gives a whole new meaning to being patient. This whole process has made me way more patient than I ever was...what was I in such a rush for anyway?? Today was long but I spent an amazing day with an amazing little girl. We got to talk and play games and just spend some quality 1:1 time together...you think you spend that kind of time with your kids but you don't. We got in the car together at 8:30 this morning and basically spent every moment together (yes, we even peed together) until we got home at 3:00. It was really nice and I am glad that we had this time. She has become this curious, intelligent, thoughtful 6-year old and I am very proud to be her mother. Every now and then you need to just back up and observe your child and how they interact with the world; it really is amazing.
Abby had a fantastic birthday! She was so happy to see all of her friends and she got the most amazing gifts. She played with almost everything yesterday; I had to pull some crafts away and make her save them for a "rainy" day...the problem was that she kept telling me "It IS a rainy day" and she was right but I meant ANOTHER rainy day...she just loves to make things and create...
June 15, 2008
HAPPY FATHER'S DAY!!! I, of course understand what if feels like to be a mother...and because we women tend to express our thoughts and feelings constantly, I know that there is this amazing bond of motherhood, a bond, I think is probably stronger than anything in the world, (even hot glue, which is the only thing that I have found to keep my baseboards stuck on in my kitchen...just a tip)...but what does it feel like to be a father??? They don't go through the pregnancy or the delivery...but they have a bond, too...before they were fathers, they rolled their eyes and walked away when they saw a parent with a screaming child (thinking...why doesn't that parent control their child??)...now, they give a knowing look and say, "I've got (one, two) of my own"...and they just beam with pride...the pride of a father is unlike anything I've ever seen...I see it in my job...it's almost always the mothers that bring their children in with concerns about their speech and language development..the dads say, "there's nothing wrong"...I see it in my husband...when Abby was born, I thought I saw some little white dots on her nose and he adamantly said, "No she doesn't; she's beautiful"..(as if I didn't think she was beautiful)..the dads may stand there quietly but their beams of pride just glow loudly...it's a look...my father has it when he holds his grandchildren....So
it must be AMAZING to be a father because it changes a man, makes them a little softer, makes them talk in a baby voice, makes them sing songs from Nick Jr., makes them enjoy the kiddie rides at Disney, makes them enjoy putting things together, makes them play games like "pretty pretty princess" and sip their tea with their pinkies up...there's something special about being a father...it makes them daddies...
HAPPY FATHER'S DAY TO ALL!!!
June 13, 2008
HAPPY BIRTHDAY LITTLE GIRL!!! Abby is 6 today and it was her last day of school...WOW!! My how time flies! I just finished filling water balloons and making pixie dust necklaces for her Tinkerbell (of course) party...it's the little details that I love; it drives me crazy but it makes me sane! So I made Tinkerbell paper lanterns and prepared pirate crafts (there has to be a few pirates, you know!!) Anyway, she is SOOOO excited; it's really the first "kid" birthday I've done so we are looking forward to it.
We are also celebrating my baby's 1st birthday, even though it's still a couple of weeks away...Abby is very happy to share her birthday with her brother....
June 9, 2008
I took another little break....every now and then it feels like the "Leukemia thing" is gone.....it's been nice...hot but nice. There is nothing better than this time of year (except of course, last year at this time of year). The kids have been swimming and Meghan has been with the girls, just like old times...swinging on the swing set, slathering on the sunscreen, sun dresses and bathing suits (oh, for the kids, not me, don't worry :)
Abby has been feeling great, she has discovered "antioxidents" and how blueberries are loaded with them and help to fight disease. Her body has somewhat recovered from the last week of steroids and vincristine and I actually put a barrette in her hair before school today; not a pig tail but we're getting there...Despite having missed probably 1/3 of the school year, she has kept up; her reading and writing are coming along nicely. She is so excited for her upcoming birthday; it's Tinkerbell themed, what else???
Last week in the car, Abby asked me about God. She and Caroline were having a discussion in the back seat. Abby said, "Ca, God is always watching you like Santa Claus"...then she said, "Remember when you were being bad and God pushed you?"...I had absolutely no idea what she was talking about and then it hit me...about 6 months ago when things were tough and I was in the middle of my best parenting ever, Caroline was being fresh about something and in the middle of her tirade about whatever it was, she fell to the ground as if she were pushed by the wind...Apparently, I told her, "See, God is watching and he doesn't like your behavior"...Well, I guess it stuck with them because Caroline said, "I don't like God, he pushed me"...I had to back track the whole thing and tell her how much God is filled with love and patiences and forgiveness...Why do they remember this stuff?? Why not the rules that you give them or to pick up their things??? Also, Abby apparently thinks God is a woman because she referred to God as "she" during the entire conversation...God love her!!
Big Grandpa came over last night to swim with the girls and I just sat back and watched...these are the little "clips" in life that I want to store in my brain forever...just magical to watch him playing with the girls...throwing them up in the air and making them laugh; just like when Kerry and I were little.
I know I shouldn't, but I thought back to last year at this time...I was as pregnant as could be and Abby was home from the hospital, and we were trying to figure all of this stuff out; organizing her pill containers, trying to determine what was a "normal" side effect, what meant we needed to take her to the hospital. I was combing her hair out in clumps, trying to pretend that she wouldn't lose all of it, because someone in the hospital told me that "all kids are different and they don't all lose it all"...I remember reading the pages and pages of side effects for each chemotherapy drug, scoping for the "hair loss" side effect and finding that hair loss was in the middle category on the vincristine list. The middle category meant "likely" but not "most likely" like the first category so I held on to that hope, even as I combed more and more away and found it on her pillow and clinging to her shirt. I brought her to the hospital in her thin, matted pig tails, and pretended it wasn't all happening. And just like any cleansing process, I came to terms with it as best I could at the time, and let Big Grandpa take her to shave it off.
I am looking forward to this summer, to watch my children play together and to get mad at them for the usual things like leaving their bathing suits on the ground, and coming down the stairs after being tucked in, and for not picking up their things...I will embrace arguing with Abby about having to do her hair..."these are the days"....my friends and I had that song as our theme for college graduation; we used to belt it out...just live in the moment as best you can...my life's lesson, I have to re-read the manual every day.......
June 1, 2008
SHHHH!! Things have been going along nice and smoothly!! We've been busy but with good things.....ahhhh!! We had a Daisy cookout this weekend and it was really fun. Abby just loves being a Daisy (oh sorry, she's a Brownie now! She always corrects me)...Michael is walking all over the place and opening every door, cabinet, etc, and taking out whatever he can get his little hands on. He prefers to bang glass pot tops together...the noisier and more breakable the better! I cannot believe he will be 1 by the end of this month! Abby will be 6!! Where does the time go?? Caroline is loving going to Corinne's and I am still not sure what I am going to do about preschool for her. We are looking forward to the summer (Auntie will be home again!!) and our days going to the lake and to aunties. Abby still has a good attitude about the lake but I think it will be hard when we are actually there. She was so sick last summer, it didn't matter where we were, she just wanted to be home or she would cry and not talk to anyone...this year, she'll be well aware that we are at the lake and everyone is going in and she's not. She says that Mimi has a special little pool just for her that can be cleaned when she goes there (I don't have any idea what she's talking about but my mother must have said something to her because she doesn't forget a thing!).
I'll be down to 2 days of work for the summer plus a few Saturdays which will be nice because it's been so busy with the extra school stuff I picked up at the end of this year. I want the summer to just play and be with my kids...this past year flew and I am looking forward to slowing down and stopping to smell the roses!!
May 26, 2008
I've (FINALLY) updated the pictures and you can see just how current they are....Halloween, Edaville Railroad, Christmas, Michael's Christening, and Meghan's birthday, & Caroline's Cinderella cake that I am so proud of...also a picture of Buddy, the McCarthy's new (not anymore) red bone coonhound...isn't he gorgeous????
So they're a little old but I'm getting there....look how much Abby has changed in just a few short (that's a funny word, none of this has been "short") months......I'll get some Disney and the care in the next few weeks...sorry it's been so busy with Disney and trying to the house on the market...
It's been long week, another steroid week, and Abby made it to school more than usual but still came home early a few days. The hardest part is the evening...at around 6, she wants (wants is an understatement) me to go upstairs and go to be with her in my bed. Sounds great, right??? Going to be early and snuggling with your daughter, who wouldn't want that?? There is something nice about it but I am not ready to go to bed at 6, I have reports to write and other things to do when the baby goes to sleep and Abby is CRANKY, she cries and mumbles, "I want to go to bed, I want to go to bed"...if I try to leave once she falls asleep, she wakes up and finds me....sometimes it just goes right through me, you know. Caroline still climbs in (around 10) but when Abby is in the bed, Caroline starts there too. They fight about who is next to me so I have to sleep in the middle (I am an "end" sleeper-HATE the middle) to stop them from getting upset and "teasing" each other by prodding the other with a toe or a finger. Usually they love each other but they have "sister" moments that bring me right back to my childhood with me sister when would press each other's buttons just to see what would happen or how far we could push. Can you believe we were like that Kerry??
This week was just a reminder that this is all still happening and every now and again it hits me...this was one of those weeks. We found out that Abby's clinical trial has been suspended. Remember way back in the beginning, we had to decide whether or not to put Abby in a clinical trial. She was randomized to a possible 3 groups, each with one or more of the phases extended in some way. We decided to do it, knowing that there were unknown risks but the underlying treatment plan was still the same. It is because of other's peoples participation in these clinical trials that we have the treatment success that we do today so we felt mostly that it was "karma" and that if Abby had to do through all of this, there would be benefit to someone else someday. Anyway, in the phase that was extended for Abby, she got an extended dose of Decadron (which is the steroid) and some other chemotherapy (Ara-C, which were the muscular shots). What they found was osteonecrosis (bone death) in some patients because of the Dedadron. This was mostly in the older age groups. It can range with osteopenia, osteoarthritis, and then to osteonecrosis. This whole thing worried me a bit because Abby so consistently complained of knee pain. But with her it was more acute and coincided with the steroids and the vincristine and went away in between. At this point, it would not be beneficial to do a bone scan because of the exposure to radiation. So we can have her calcium levels checked with her labs. And in the meantime, we need to start with calcium supplements. I will probably always worry about her bones and fear the possible cognitive issues that can result from all of this medication. The biggest side effect is cardiac issues so I'll always worry about that too...but at least I'll have all of that to worry about...this week it was real again and that's why I took a break from the updates...I just needed time to catch my breath and take a break from it while I processed everything. It's a roller coaster for sure but it's a ride that I'll buy tickets for again and again if it means I get to go the top.
I've been counting down to when her therapy is over (August of 2009) but this will all be there forever....once she finishes Maintenance, she'll go to clinic every month for a year, every other month for the second year, every third month for the third year, everything fourth month for the fourth year, and every 6 months for the fifth year...even though she won't be getting medication, it's still lab work and clinic visits until she's 11 or 12!!! And then she goes for a "survivor's group". The longevity of this process is overwhelming...this is not a disease that you treat, and move on with your life...it BECOMES your life and it IS your life....I thought she would go through all of the crap, grow her hair back and it would be like it never happened...this year has been such a process of growth for me in so many ways. The best thing I can do is embrace this, like Abby has...she was fixing her bikini yesterday and she realized the bikini and leukemia has some similar sounds so she started chanting (rather happily) "Leukemia, Bikinea, Beukemia" and laughing....
And before I go, I just have to share another one of Caroline's descriptions....she came up stairs and said to me, "Mom, those guys with the glass skin...I won't throw them down the stairs or anything"...I had NO idea what she was talking about and I didn't have my Caroline decoder ring handy (they are very high tech and take a long time to figure out)....so I thought about it (completely out of context with my laundry folding) and then realized that she was talking about the porcelain disney dolls that I have had for them up in the closet forever...every now and then I take them down and show them but tell them that they are not yet ready to have them...she just cracks me up with the way she talks about things when she can't think of the word.
May 18, 2008
Okay, John and I are weak, weak, weak human beings...we just can't do it! Michael is going to be just like Suri Cruise except without the millions and the paparazzi following...we just can't take his bottle away...and we're the ones who forced it on him in the first place. From the moment he could hold it himself, we just gave it to him...our nights were so bad, we didn't care, as long as it was one less thing we had to deal with...so we made our bed and now we'll lay in it! He has NO interest in his sippy cup and he flat out screams like someone is pulling his fingers off. Each day, I say, "We'll do it tomorrow" but I just don't have it in me to let him cry like that. He is so easy going of a baby; it just seems worse when he is so mad about something. Is this what happens with the third?? You lose your energy and ability to fight it?? Is he going to have all the candy in the aisle at the grocery store and wear diapers until he is 4???
Today was a day of accomplishment around the house and it feels good! We actually have a 2 car garage now, can you believe was a floor under all of the cardboard and old furniture? John mowed the lawn (well, the weeds) and put the patio furniture together....I went grocery shopping (I HATE, absolutely HATE Market Basket but when you're doing a big shop, it's definitely a savings over Hannaford), and we had a nice grilled dinner all together...we should be ready to list our house soon and will just hope for the best. It's a tough market for sure but I believe now more than ever that everything happens for a reason so if it's meant to be it will be...it's a nice house and it will speak to someone out there like it did to us...
On a sad note, we did finally decide to have Kramer adopted...it was the right thing to do; he's not had our attention this past year and he deserves it. We found a wonderful, loving family with 3 little ones and a fenced in yard and a stay at home mom. Kramer is the kind of dog who just wants love; he would stand up on his hind legs and hug you if he could...he just wants to lay with someone on the sofa...our yard isn't fenced in and he was constantly escaping and rolling in some dirty stinky swamp and then returning home...giving him up was one of the hardest things we've ever had to do but we know in our hearts that it is better for Kramer and it would have been selfish for us to keep him if we weren't able to give him all that he needed. We would have been keeping him out of guilt and not love. He's doing great, the kids love him, and his new family is letting him sleep with them on the sofa...I miss him a lot (John was kind of a mess too) but we know it was right.
Abby has clinic tomorrow; John and I are splitting it because it's a long one...she has a spinal and starts steroids so it should be a nice long week :)
May 15, 2008
What a journey!!! In so many ways Abby's Leukemia seems so distant from the forefront of our lives and in other ways, it's all just beginning...this past year has been such a process of developing, attacking, and denying so many feelings...I feel like we truly are just beginning to live again. I thought I was already here but I wasn't even close. Disney was life changing and it really couldn't be more profound. I bawled my eyes out when we left because I was sad that it was over; it was so wonderful to have this to look forward to, I bawled because I was so happy that we had just given (well WE didn't but if felt like it) our children an amazing vacation, I bawled because I was overwhelmed by the entire experience. We needed a vacation more than I ever would have anticipated. It brought us all together in a way I can't even describe in words but it's in my heart and it affects the way I feel now. Make-A-Wish took care of EVERYTHING!!! A limo picked us up at our house, we were given a van to rent, passes to the parks, a "special" VIP button that allowed us to skip the lines, meet the characters, skip paying for parking and strollers....I have never felt so special....We stayed at a place called "Give Kids the World" (self-explanatory)...please check out the website (GKTW.COM) and read their story. A man named Henri Landwirth founded the resort...his story is amazing...he is a holocaust survivor who had an evil childhood; he escaped to America and served our country and is truly an example of the American dream. It makes you think about how lucky we are to have the freedoms that we do. I know it sounds so sappy but it is very real and every now and again, you need to be reminded of what our veteran's have fought for for us.
Anyway, it was HOT!! And John and I worked our little asses off, pushing those strollers!! The girls had autograph books and got all of the princesses and Micky and the gang to sign them..it was so cool; Caroline got all shy and did her little "ah shucks" held tilt that is so endearing (at least to me :)
She thought Cinderella was sooo beautiful!! We went to the princess tea party at the Grand Floridian and the girls got to pick out beautiful princess dresses, shoes, crowns, and wands at the Bippity Boppity Boutique as they had their hair, nails, and faces done...It was so fun; right up Caroline's alley. Abby loved it as it was going on but got hot and immediately took her hair piece and crown out when we were done. Caroline wore hers for 2 days!! Abby was tall enough to go on most of the main attractions and she loved Space Mountain the best. Halfway through the Mt. Everest roller coaster, she turned to me and said matter-of-factly, "I am not doing this again with Daddy". (We had to take turns)...Michael was pretty much strapped in a stroller for the week and you'd have thought it would have hindered his development a little bit but NOPE, walking and letting go, getting braver and prouder by the moment of his new found skills....so adorable! He slept the entire plane ride there and back...little angel on my shoulder for sure! Abby and Caroline got to feed the dolphins at sea world...no having to wait in line. We were spoiled!!!
And as for Tinkerbell...that little pixie!! She is OFF limits at Disney, NEVER signs autographs or does character greetings but guess what???? For the first time ever, she was on the grounds at Disney for the Pirates and Princesses party; the park closed down early on Friday night and we bought tickets for this event. There was a magnificent parade with all the princesses and Tinkerbell on her own float!! Both girls said this was their favorite. Abby got her wish and we got ours. We were plucked from our life and placed in a dream world. I still felt sick but it didn't matter...Abby did well, got tired easily but did well and NO heating pads all week! The baby slept in a crib in our room and every night, he would wake up, stand up, and just yell at us. He knew we were there....we had to get up and leave the room so he would go back to sleep....little bugger :)
I feel so refreshed and ready to take on the second half of this journey........
Back to reality....Abby has clinic on Monday; she'll have a spinal and start steroids again...but one step closer to the end of treatment....15 more months!! WOW!
May 11, 2008
I swear I'll fill you in on Disney but I need a good chunk of time to sit here so it will be later.......I promise!
Happy Mother's Day to all!! What new meaning this holiday has in so many different ways...First of all I am once again a mother this year to my baby boy, who has been just a precious gift from God! I had so much time to hold him and play with him in Disney and that is what I needed....his first year has been a blur and I feel like I missed so much of it even though I was here for all of it...maybe it's because I know he's my last baby and that baby year is just a blink of any eye, maybe it's all that's consumed me from Abby's situation, likely a combination, but my advice to new moms is to just hold those babies...don't worry about their routines and their sleep habits or spoiling them....just hold them as much as you can.
Thank you to all of the wonderful moms around me who set a good example and make us all better people just by our associations with you...my mom, my sister, my friends, the school teachers who give up their days to take care of your kids while they learn, troop leaders, coaches.....this day is to celebrate your commitment to your children and to mine...Thank you..and "Mrs..." Corinne....you have been a gift and I am so thankful for you, knowing that my children are loved and cared for while I am away at work...you have no idea how comforting it is to me to know that if I cannot be with them, they are with someone like you. Happy Mother's Day!!
In this day of celebration, there is also sadness...for those who have lost a mother or a child and those who care for sick children and sick parents....I cannot imagine a greater pain than the loss of my mother or one of my children...I pray for you...
Many tender memories soften your grief,
May fond recollection bring you relief,
And may you find comfort and peace in the thought
Of the joy that knowing your loved one brought...
For time and space can never divide
Or keep your loved one from your side
When memory paints in colors true
The happy hours that belonged to you.
May 9, 2008
Hello!!! I don't even know where to begin, I have so much updating to do....I'll start with a quick blurb to get up to speed and I'll be more detailed later....We left for Disney last Thursday and adrenaline was the best medicine for me!!! I was still sick but doing much better and able to enjoy our family vacation. It was an absolute blast and just an experience beyond our wildest dreams!! Having said that, we came back on Wednesday and Abby was sick but I think she just caught a little of what I had....she had a sore throat and had to go to the Doctor's but we are just soooo happy that she was healthy for the trip!! She went to school today and was glad to be back...we were just plucked from our lives and brought into this amazing fantasy world! Soooo refreshed!!!
I'll catch up more later and fill you in on all of the details.....
April 28, 2008
I saw my doctor today and I have an ear infection and wheezes in my lungs. He prescribed a Z pack and gave me some inhalers and Robitussin with codeine....everyone around me is pitching in to help me get this thing out of my system before Disney...sleep, rest, more sleep....just get RID of it!!! And don't give it to anyone else...my voice is back a little; it comes and goes and the cough is getting looser but I still lose my breath easily and can't yell at my kids...definitely can't go to Disney if I can't yell out to them...
Got the girls autograph books and they are growing their nails for their styling at the Bippity Boppity Boutique (soooo cute!!!) I will be all princessed out for sure...will need to go to a Sox game or something. I was telling the doctor about our plans for the boutique and the tea party and he said, "I hope your husband is getting a cigar and good fight or something like that"....He's going to need a good dose of testosterone....maybe he can hop over to Universal and go on all of the big manly rides :)
This trip is just so amazing in every essence of the word....SOOOOOOO excited!!
April 27, 2008
Abby did fine....the same old ER/fever thing...she gets a work-up, antibiotics for her port...her port was accessed somewhat easily; John said it was a new person...must have been beginner's luck :)
They got home a little after midnight...I am feeling a touch better but still have a way to go so I will just keep at it! We have got to make it on this trip!!
The girls played soccer Saturday morning but Abby just sat in Auntie's lap. She said she still wasn't feeling well but I just think she knew that the Auntie's lap option was available to her :)
Caroline is getting the hang of it, even scored a goal in the other team's net! She still put her arms up in the air and high fived...that's the beauty of this age; they don't care as long as they are having fun! The girls and the baby spent their first day at the lake with their cousins and Uncle Mike, later joined by Mimi and Boppa, and Auntie Kerry. I missed out but got a golden opportunity to try to sleep this thing off! I guess Abby was good about the water and didn't seem to mind that everyone else could touch it and be in it...Mattie played games with her...that boy is so darn SWEET and ADORABLE!!! I can't believe he will be turning 9! It seems like just yesterday I held him in my wedding gown! (Matt was just 3 months old when we got married!)
April 25, 2008
Well, well, well.....the storm before the calm???? I am sick, started with cold sinusy thing on Wed. and just feeling like absolute crap but the good news is that the day before I got sick, I had a tooth problem and ended up on an antibiotic for that so a sinus infection should also be covered...dental co-pays are much less than medical co-pays; maybe we can just start going to the vet? Didn't Kramer do that on Seinfeld?? Anyway, I've been trying to beat it so that we will be in good shape for Disney but wouldn't you know it...Abby just came down with a fever so John is taking her to the ER right now. Let's keep our fingers crossed that this is all to be water under the bridge so we can have a smooth, safe, and HEALTHY trip!!! I am really just beside myself...things were going sooo well; Abby FINALLY had her play date with Emily Croteau and it was nice to get all of the kids together. Her mom and sister came and Audra and her boys came and they all played very well together.
It is almost 7 pm and I must go to bed so I can continue to fight this thing. I am completely aphonic and can barely even whisper. Hopefully, John and Abby will be in and out and home in bed before you know it. Maybe we'll wake up and go to soccer like nothing ever even happened :)
Tinkerbell sent Abby some pixie dust today in the mail; I think I'll sprinkle a bit....
April 21, 2008
Clinic went well; Abby's ANC is still a little low but high enough for her to increase to 75% of her chemotherapy so we are happy (???) about that. I guess the more ammunition we have to fight those bad guys, the better. Abby's port was easily accessed with good blood return and it was so smooth; no why can't they do that in the ER??? Abby's hair is coming in nicely, little curls, almost ready for some sort of headband. I'm still waiting for the pig tails though....After clinic we went to Kim B's and had a play date (FINALLY!!!) with Sarah and Kaitlyn. There were no issues at all with the girls, we barely knew they were there and go to talk and catch up. Kim it was great seeing you and hanging out; let's not let that much time pass again!! Abby is also looking forward to another play date with Emily C. later this week; it only took all year for me to finally get my act together and invite her over...so, in a way I feel like it's catch up time; I am realizing more and more what a fog I was in and how good if fells to finally lift out of it.
April 20, 2008
Tomorrow is clinic; I haven't been there in a while. Earlier this week, Abby said, "I quit clinic"....it came from nowhere and I still don't know what she meant. She said, "I wish I never got Leukemia" very matter of fact. But she never said anything else about it and genuinely seems excited to go...in fact, she said to Caroline, "Ca, I don't mind if we go to the lake and you swim, it's okay with me"... She started Soccer this weekend and is on a team with Caroline, Meghan, Colby, and Colin....it is so good for her to run around; she is stiff and still has some weight fluctuations.
Today they played and played like they've never played before...the imagination that my two girls have when they are "ON" is incredible. They also have their little purses packed with some Disney dollars and are pretending with their Minnie Mouses that they are going to gymnastics and Disney. They are wearing little tutus and fairy wings and are quite adorable. They are very busy though and I keep hearing things like, "C'mon we're going to be late"...They are so excited for Disney and I have finally allowed myself to get excited as well. I still haven't figured out how you carry a baby, 3 car seats, 5 pieces of luggage, and keep 2 young girls at bay, but other families have done it so it is possible :)
Make a Wish came this week and went over our itinerary and it is just so amazing...I can't even really grasp the magnitude of it all...it seems so easy to go to Disney, people do it all the time but it is soooo EXPENSIVE!!!! And Make a Wish makes it so you don't have to worry about a thing...someone picks you up and you go! I am beyond ecstatic!!!
On another note, if anyone knows anyone who is looking for an older, gentle family dog, please email me and let me know.
We are getting ready to put our house on the market and will need to rent for a while (That is of course if it sells but we know that what is meant to be is meant to be)....
April 13, 2008
Whooh!! I have to sit for this one! 1 year ago today, we received the most devastating news that any parent could imagine...I can still hear the words ring through my mind as we were escorted down a long hall to a conference room by a team of medical professionals..."We obviously don't bring you down here with good news"...a pit immediately formed in my stomach and I knew exactly what it was..."She has Leukemia"....John just burst into tears on the spot and I just sat there, numb and nauseous...they started their little spiel but all I heard was "Leukemia" and "2-3 years of treatment"...then I asked them to get my mommy. She knew the minute she entered the room and saw the look on our faces....and then I threw up. Our lives have not been the same since....we endured a year of hell to put it mildly and to be quite honest...it is not until these past few weeks where I felt good that I realized that I hadn't felt good all year, even when I thought I did. I thought I was doing great because I was able to smile and make jokes, but now I realize it was all subconscious strategies used to get me through. We had countless nights of screaming and yelling and not knowing what was even going on; a multitude of clinic visits with spinal taps and chemo therapy; weeks of my daughter's personality just gone and replaced with a steroid monster, hair loss, salmonella poisoning, several ER trips, at least 6 trips to the pharmacy every month....but we also had Michael, a bundle of joy...and we made new bonds with so many people and our community...all of those bad things cannot overpower the good that came from all of this...it just can't...it's like Darth Vader vs. Luke Skywalker...the good guys always win. So thank you, in the simplest of what those words mean...THANK YOU for helping us make it through this year...because of all of the love and support, I have not ever gone back to that dark place where I was this night 1 year ago...and I will never go back there again.
The date today has been bringing up memories all week and I think of those early days in the hospital when we signed form after form, agreeing to surgery and anesthesia, and medications....having to ignore the pages and pages of possible side effects...the overwhelming responsibility of learning all about it all, not knowing what to expect and watching my little girl disappear physically and mentally...first it was her personality; she growled at people and didn't play or interact...and then I started combing her hair out in clumps, thinking in my mind that this wasn't happening. I would come home and read the newly started website and think it was someone else's family. We all took shifts at the hospital and I had to trust that my other little baby Caroline would be fine through it all...no way she could have possibly understood the intensity of it all...and this unknown baby in my belly, helping me to take care of myself. There were times when I thought I couldn't possibly make it through another night and I couldn't possibly watch another treatment or test or watch Abby not be herself and have to explain...I remember that for about 2 weeks, I said over and over to myself, "My daughter has Leukemia...my daughter has Leukemia" and couldn't even call my OB because I would have to say that...I would be in the elevator and smile at someone and say, "What floor?" but what I was really saying was, "My daughter has Leukemia"...I didn't want to hear about everyone else who had survived it and I didn't want to meet anyone else who had it...I didn't want to hear that it would become "routine"....I only cared about Abby and what was going on with her...percentages and numbers didn't matter (and still don't).
WOW!!! Look how far we've come! It IS routine and it IS familiar and she IS doing fine but you know what??? Despite all of the growth and all that has passed, it still absolutely, completely SUCKS!!! It SUCKS that she has to take all of these pills and have her little body poked and prodded and needled...it just plain SUCKS!! Even if she's great about it and even if she tolerates it fine...I don't wish this on anyone...no child should ever have to endure what Abby does....we have 16 months to go and then we are throwing the biggest party ever!!
April 10, 2008
Things continue to run smoothly...shhhhh....I got a fortune cookie about 2 weeks ago that said, "Happier days are definitely ahead for you, struggle has ended"...is that absolutely beautiful or what??? I remember when you would hope that a fortune cookie meant that a certain boy would like you, or you would win money, or something like that...but "HAPPINESS" might as well just be a billion dollar lottery...
April 7, 2008
Abby has been in a pretty good routine this week; no labs, no clinic...just going to school every day like a "normal" little girl. She is still at 50% of her chemotherapy and I am told that it shouldn't effect her overall treatment prognosis...they, of course, don't know everything but I have to trust that it is more of a risk for her to have her full strength chemo and risk her white cells getting too low and causing serious problems now...I do, though, I trust every instinct I have that she is going to beat this cancer and be just fine...I picture her pigtails (of course), I picture her swimming at the lake again, I see her whole life, graduations, weddings, babies...a full life filled with joy and fun and hopefully an inner instinct that allows her to live in the moment. I always think about that saying or poem or whatever it is with the last line that says, "And dance like nobody is watching" and I hold on to that because I really think it says it all...be yourself, and be free....I have been singing out loud while on my treadmill and Caroline just looks at me and I think she actually thinks I sing well...she'll find out the truth probably when she's about 13....This week has felt as "normal" as it has been since almost a year ago...Caroline had a play date with Ryanne today, Colby took the bus home with Abby, Meghan slept over...I watched the girls play on the swingset and blow bubbles...like a scene straight out of little bear....ah, the way life should be :)
April 3, 2008
Can you believe it's April??? April is the new January....I am starting all of my New Year's Resolutions now. Abby has been feeling well! I actually worked my goal of 17.5 hours this week (it only took me 4 months to do it!!!) You know what? I feel good; REALLY good (and NO, I am not taking any medication or anything)...I just feel good and now I can look back and realized just how BAD I felt this past year...even when I thought I was feeling good...it's very strange. I feel like I am just putting my head above water now...it's been a very long year, longer than I even thought. I had no idea how much I was being taken care of. Audra said something to me like, when Abby was diagnosed and I went to the hospital, I knew that it would be your job to take care of Abby and my job to take care of you...how true it rang....my family, my friends, my co-workers, my community, everyone has taken care of me and my family and I am so thankful and after talking to a psychologist for only 2 times, I can say how grateful and thankful I am and get rid of some of that GD guilt!! She told me that none of this year has been my fault, which I knew but it was eye opening this time to hear it. Maybe it was timing, maybe I was ready, maybe I didn't even realize. I just felt sooo guilty about so many things; it's hard to explain and no matter how much you rationalize or know why you SHOULD or SHOULDN'T feel a certain way, you still have the feeling and you have to learn to deal with it. I guess I felt like John and I should have been able to take care of our family ourselves but because of our poor planning and not being ready for the unexpected we couldn't and that was our fault. But I am okay with that now; it is great to have so much help. There will never ever be a question in my mind about how much love and kindness there is in the world. Everyone around us just anticipated our needs and took it to task to make sure our needs were met...I didn't even realize how much or what we needed. It's truly amazing! My family is surviving and doing well and we have grown in so many ways this past year. My baby is 9 months old!! My little girl is 4!! And my Abby will be 1 year status post diagnosis this month!! And she just might have those pigtails for 1st grade! She'll be the only teen going to highschool with high pigtails because of her mother's issues with her losing her hair :)
Thank you for listening, caring, loving, and taking care of me and my family.
March 31, 2008
Abby came back from clinic without needing a transfusion and her ANC went from 600 to 2600 which means her white cells are doing well. She is still at 50% chemotherapy and won't resume 100% until maintaining good labs for a few weeks. She has been talkative and happy and I had a really good day with her. We went to Daisy's and she just loves going there.
I also had a great day with the other 2; Michael had is well visit and he is well, "well". He weighs 21 pounds...all I need to do is lose about 3 of him right around the middle...still working on it....he says, "no" now very consistently (actually he says, "na" but it counts--my SLP training :)...he crawls over the refrigerator, opens the door, looks at me, and says, "na"....he goes over to the fan in his room, pauses, looks at me and says, "na"...it's quite adorable and he appears so proud. Now tell me, whose design idea it was to make the pediatrician's stool on wheels??? It's great for the doctor but what about your children while waiting for the doctor??? Sometimes you can be in that room for a half an hour...and you're supposed to keep your kids off of that carnival ride, free, and right in front of them?? Then we go to Wal-mart for pictures, and they have the same stools...only theirs are 3 feet tall and just begging for a fall...I spent a good part of today keeping Caroline and Michael away from stools today. But I was happy to do it! We had a great day together and I feel like I spent a little QT with each of my children....I just love them so much!
Abby's hair is forming a little "DA" in the back and it is curling on the top...it's a little darker than it was but it is quite beautiful and I absolutely cannot wait to put it up...probably another 6 months.....
March 31, 2008
Abby did a little better with her steroids this week...still cranky and snappy but overall, not as hard to deal with..I was away for a couple of days so Abby's schedule was moved a bit. She still hasn't been able to maintain any consistency with school and that is hard because she loves it so much. One day last week, I had to drive from Gardner to pick her up but the good thing is that I know I can do the whole thing round trip in 1 hour!!
Abby is at clinic right now with John; we will find out if she needs red cells. If so, they will be there a while; I have to bring the baby for his "well" visit...that word just cracks me up. To think that the "well" visit used to be kind of a pain, now I welcome it...it has whole new meaning...my "well" child needs to go to the doctor...I can just picture my beaming face in the elevator. Oh, just his weight and head circumference?? That's nothing...a shot...that's nothing...just tell me how cute he is and we'll be on our way!
March 31, 2008
To the very special Taylor Liljegren....I hope this doesn't come out the wrong way because I don't even know you but I am PROUD of you!!! So many kids your age are consumed with what is going on in their lives (I know because way back a long time ago in a planet far away...I was a teen)...for you to do what you did in honor your own birthday is truly an amazing, thoughtful, and most of all, kind and selfless thing to do!! You must also have incredible friends around you and I hope you all feel so good about what you did. You will all have a special place in our heart, which I am finding is the biggest place in the world!! I would be proud if my children grow up to be as selfless and giving as you are. Thank you for your gift! You are the leaders of tomorrow and I know how corny that sounds, but it is the truth so lead by example...you are amazing!
March 29, 2008
Wow! Soooo much to catch up on but I have to start someplace...I need to thank so many people but I'd like to start with Mrs. Z (Deb Z--I was going to spell it out but still can't do it without looking it up), Mrs. Mola, and Mrs. Hall for their work in the classroom, making those children feel so loved all of the time. And I cannot thank you enough for your persistent efforts with the Abbysangels bracelets!! It has truly been amazing and I am blown away with all of the support in the community! I was given a generous donation from Mrs. Z on Monday and it is going to cover the recent ER co-pays completely!! AWESOME!! Thank you so much!!
Like my brother-in-law's SERVO PRO company says, "Make it like it never happened"...that's what you guys did for us.
And to Jackie Favreau, Leah Blanchard and the rest of the Wallace Civic Center Figure Skating Organization...thank you so much for making us feel so special! Your donation will cover Abby's prescriptions for the next 2 months; you have no idea how much that means to us! The show was exciting and Abby still keeps talking about her beautiful flowers. Jackie it was so nice to meet you and chat!
Kourtney and Julie, you continue to amaze me with your friendship. You are truly wonderful people and are absolute gifts to me!!
March 24, 2008
Last night I slept wedged in between my 2 daughters and didn't mind it a bit...see it's different when you choose it, not so great when they decide it for you :)
Abby went off to school today and I decided to pay her a visit so I could hear her booktalk....well, pulling out the video camera didn't help one bit because she was like a deer in headlights...the silence was deafening! Thank you Mrs. Z for making it less painless...See, they are really different when their mothers are around, especially with a camera in their face!
Sure enough, Abby decided that she wanted to come home with me because her belly hurt. Now, I should know better by now but I thought maybe she just wanted to come home because I was there, but of course, as soon as we got home, she vomited 3x and is now on the sofa with a heating pad and blanket...no fever though!! As far as I am concerned she can be sick on my sofa all day, if it means we can avoid the ER :)
Apparently, all of the purel foam and soaps are just missing that 1% that they can't seem to claim....when you can't count on 99% effective, what can you count on??? Now all of you people who conceived while on contraception are probably laughing right now...99% effective??? Is it really worth that 1% risk? That's why I won't have lasic surgery...that 1% chance of blindness is enough for me...I stick to my bottle glasses and heavy duty contact prescription, thank you very much!! See how wise 36 is????
March 23, 2008
Happy Birthday to me...Happy Birthday to me...4 years ago, I got the BEST birthday present in the world...my little sweet Caroline came into the world!! And in record speed too...I think the whole thing was 4 hours...I remember I was being induced which was perfect because we had Abby all set to go to Rosie's and my mother hadn't worked the night before so she would be around...it was all planned, until Abby vomited in the entry way carpet just as we were leaving...in came Big Grandpa to the rescue (see there was some hidden foresight there!) I was sad to leave my sick baby but I had another baby wanting to come out...so we got set up with the pitocin drip by about 9:30, and I delivered her at 1:11 pm. All back labor and it hurt like hell! (Didn't get the pain meds in time)....She came out blue with her cord wrapped in 2 knots...my sister and my mother had this look of panic on their face (I found this all out later because I was so focused on my own pain)...but Dr. Wilson didn't panic and he just gently untied her and got her breathing and pink...she was intense then and she's been intense ever since...She is happy she is happy, and when she is mad, she is mad! She is fun to be with and when she smiles she has this dimple and her face just lights up the world...that is what I always tell her. I love that she climbs in bed next to me every night around 11, I love the way her hair curls, I love the way she laughs quietly to herself, I love the way she loves her brother...she can't even walk by him without stroking his cheek or patting his head..it's innate for her. I love how she mixes all her words up....yesterday she was asking me about the "cotton candy thing that you bang"...I had no idea what she was talking about and finally realized that it was a pinata! She says stuff like that all of the time...in speech pathology we call it "paraphasias" and "circumlocution"...in mommy land we call it "cute". Most of all I love when she comes over to you, sits in your lap and says softly, "I like you"...ask anyone who knows her, she has done this since she could talk and it is the true mark that you have connected with her..."I like you"...well, Caroline, I love you and I fell so happy and blessed to have you in my life...you help complete our family.
March 22, 2008
Abby woke up with a fever so it was another trip to the ER, another $100 co-pay, another 6 hours, more IV antibiotics....we KNOW the drill!! Abby was wonderful and thankfully, Big Grandpa came with me today....it's always easier when someone else is there. It took 2x to access her port and she was just great about it all...she reminds them what to do and knows exactly when something is missing...last time she told them that they didn't have the purple tube for blood (for her CBC) and this time she told them that they forgot her peetainer (her word for pee container)...Big Grandpa had to get the urine sample because I had gone to get some lunch and decorations for Caroline's cake for tomorrow when Abby decided she had to go...Now THAT'S love!!! Thank you Big Grandpa for your time and your love, it's truly never ending...and to go out of your way to find a Friendly's so Abby could have a mixed swirl cone instead of just one plain color...Abby had to miss the town Easter Egg hunt but we told her we'd have our own just for her...we made it home in time to decorate eggs and get a good night sleep for the Easter bunny.
Little Michael took a spill today and an end table fell on him...he's got his own egg just in time for Easter...poor thing he is all bruised but he seems fine. Of course, I'll be checking in on him all night to make sure he's okay...we're going to have to watch that one closely, he is in to everything, but so adorable doing it!
Tomorrow is the big B-Day, my baby girl turns 4 (although I can't say I'm that upset about saying goodbye to 3)...she's getting so big...I want to make her birthday extra special this year, it's been tough on her and she has no way to even understand any of it...so Cinderella's palace will invade my sun room, I just hope the cake comes out! I turn 36 tomorrow, 1 step closer to 40 but I feel just as young as I did in college, just more tired...but wise in ways I never ever would have expected...I wouldn't change this time in my life for anything, even with Abby's illness...it has brought out so many feelings and only accelerated the love I have for my children...And Uncle Mike, is it the big 40 yet??? I always forget that you really aren't that much older than me...38?? Happy Birthday, it's nice to have good company on such a special day!
Happy Easter, sleep well! Good night!!
March 21, 2008
Abby went to school today and Caroline got to play all day with Meghan...I had some wonderful down time at home (Michael took a good 3 hour nap!!) so I was able to clean and organize and it felt great!! No more fever (shhhh) for Abby so let's hope that's the end of that!!!!!
Looking forward to Easter and our birthdays (Caroline, Uncle Mike, and I all share the same birthday and this year it falls on Easter)...I will be attempting a fabulous castle cake for Cinderella for my little princess....I'll let you know how it all turns out.
March 19, 2008
I officially give up! I think I've said that before but my resignation keeps getting rejected! I tried, I really tried to get 2 back to back work days in...in fact this morning I actually got all the way to my building only to turn around and take Abby to the UMass ER...another fever, another septic work up, more IV antibiotics, another chest x-ray, another nasal swab, and now more oral antibiotics...WOW!! I am fried!! Good thing she's such a trooper...I stopped at Michael's and picked up some crafts and she was as happy as could be to do them...she had a good experience with her port on Sunday so she was fine with it today...she was not so happy with the nasal swab or the chest x-ray though. She just didn't want me to put her down and she had to stand for the x-ray. John relieved me mid-day and she is home now sleeping....I am going to watch Idol and then to sleep...fortunately I am able to see my caseload tomorrow so they won't miss again.
March 19, 2008
If anyone is interested in becoming a part of the bone marrow donor registry, use the following information:
The National Marrow Donor Program at DF/BWCC
Phone: (617) 632-2561 or (866) 875-DFCI (3324)
E-mail: NMDPDonor@dfci.harvard.edu
Web: www.dana-farber.org/nmdp
Also, keep your eyes opened for local donor drives...when my friend Carol had a drive for her mother, people in a bike race stopped in to donate as they were passing by!!
March 19, 2008
Someone (my mother, we all have one!)recently pointed out to me that my update on the home page might not be read, as there haven't been many changes to it so here is a recent addendum to bottom of the home page:
From the Laine, Murphy, Sprague, and McCarthy families, we would like to take this time to thank each and everyone of you who has helped support our family through this difficult time. Because of the support and fundraising efforts, Kelley was able to be by Abby's side during the toughest phases of her treatment and many of the medical expenses have been taken care of. The most important gift of all was the gift of time. It is invaluable that Abby was able to have her mother home with her when she needed her the most. All of your prayers, thoughts, wishes of encouragement, meals, and donations were such amazing acts of kindness and will never be forgotten. Abby will continue to fight her battle with Leukemia, with an anticipated treatment completion date of August 2009. Kelley will continue to provide updates about Abby's medical care and to journal the family's experiences. Our families have been changed forever and because of the wonderful experiences we had with thoughtful, caring, and loving friends, neighbors, colleagues, and caregivers.
March 17, 2008
Yesterday afternoon, Abby came down with a fever...I totally wasn't expecting it, either...she slept well the night before and didn't have any symptoms of anything, but looking back, she for sure was a little loafy....So I knew what I had to do, even though I tried to deny it....off to UMass we went, all EMLA'd (my new word) up and ready to be poked...it all went very smoothly....they accessed her port and got blood return immediately...which was a HUGE relief because the past 2 times set Abby back and she was scared...she covered her port with her hands and yelled, "NO" very emphatically when anyone went near it. So I had to hold her down (which just totally sucks) and as soon as she saw the blood return, she smiled and started interacting with everyone. I can't imagine what that moment of panic must be like for her...how scared she is that they won't be able to access her port. She got IV antibiotics and a chest x-ray...which was negative. Her labs came back good, she is no longer neutropenic and can resume her chemo today at 50%. We still have to wait on the blood cultures but they didn't need to admit her and the whole thing was about 5 hours (the fastest yet!) But the greatest thing about it was that John and I handled it on our own!! Neither one of us missed work, had to leave early or go in late, we didn't need anyone to watch the other 2! WOW!! Almost a year and we finally did it on our own....well, now that I think about it, that is not exactly true...we were out of EMLA cream (wouldn't you know) and I had already called the prescription in anyway for labs...so my dad came over while I waited for John to get home from work so I could run to the pharmacy to pick it up so we could save 10-15 minutes...so ALMOST completely independent. You didn't have anything else to do, right DAD?? I think that's why people move to Florida when they retire. They say its for the weather but I really think it's just so they don't have to continue caring for their grown children. There's hundreds of communities down there just laughing at all the suckers that stayed behind.
March 16, 2008
I can't believe he did it twice in one day, but my nephew managed to make me cry. Because I have an intense fear of talking in front of a crowd, my brave and confident 11 year old nephew agreed to talk briefly and introduce Abby at the Wallace Civic Center Figure Skating Show yesterday....We didn't prep him and he had nothing prepared and he didn't say much but he said just enough and he said it perfectly...and he included Abby and had her say "hi" and "bye"....he is just so natural with her. During the first show I sat behind them with Caroline in my lap so it was difficult to concentrate but he brought me to tears because he said something about the raffle and then said, "But all we really want is for Abby to get rid of this". During the second show, I sat across the rink and I watched from afar...and basically just lost it...seeing her with him made her look so small and young and it felt like it was another family and I was just looking on. For some reason, it just hit that she has been fighting this disease and will continue to do so for over a year. Anyway, it was a good cry, I haven't had one of those in a while. It was part reflective, part happy, and part sad...but all in all a good cry! So thank you Ryan, your confidence astounds me!! And thank you again, Big Grandpa for giving up your time.
Thank you to Leah Blanchard and everyone from the Wallace Civic Center Figure Skating Organization for choosing abbysangels as your charity and for inviting us to be your special guests! The skaters did an excellent job and my girls and Meghan enjoyed watching them. It was also interesting for Ryan to see the "other" side of skating. And it was soooo thoughtful to have one of the skaters give Abby flowers...she just asked me to move them closer to her because they smell so pretty!
Anyone out there who is NOT on the bone marrow registry should go get swabbed....when my friend Carol had a bone marrow drive for her mother, I became a part of the registry and I will be honored to be a match. Jane (Carol's mother) was fortunate enough to find a match and successfully win her fight with Leukemia. All it takes is a quick swab of the cheek (think CSI)...and if you are a match, you donate your bone marrow...it's not like giving a full organ or anything...it's a "no brainer" and there is SUCH a need. Imagine how powerful it would feel to save a life like that! I get chills just thinking about it.
March 13, 2008
I am really not on the ball with my updates...sorry! Abby's labs came back and her platelets and hematocrit were fine but her ANC was very low and she was neutropenic...of course I hit the panic button again. I was at work and I immediately called my father and had her dismissed from school. I didn't want her to catch anything because her immune system was so low. But later in the day I was able to speak to the NP and felt better about the whole thing. I had all kinds of worries about the Leukemia coming back and Abby not being able to fight off any infection...anyway, I was told that she is more at risk at infection from herself because her bone marrow is so taxed that she doesn't have much reserve to fight off infection and because she is already battling some sort of virus, she is at risk for cross over from her bowels and things like that and she could get really sick. But as far as being in and out of the hospital recently, she is apparently doing as well as, if not better, most Kindergartners and 1st graders who don't have Leukemia. The NP said that there was such nasty bugs going around this year in particular.
She is feeling well and almost done with her horse pills. Because of her low counts, she has to stop her chemotherapy for a week...she'll need labs again on Monday and if they come up, she'll resume her chemo at 50%. It doesn't postpone anything, it will just omit some of her chemotherapy.
On the good side of everything, way back when Abby was first diagnosed, her medical caregivers referred her to the Make-A-Wish Foundation. We met with them about 2 months ago and Abby (of course) wished to go to Disney to meet Tinkerbell. They granted her wish and we will tentatively be going to Disney World in May. At first, I wasn't sure we should go until Abby was completely done with treatment but then I thought that we should just seize the moment and after having such a dark cloud for so long it would be such an incredible thing to look forward to. So we are just beside ourselves at the prospect. We have not done any type of family vacation yet, other than a few nights in Maine and a "mini" trip to Santa's Village and Storyland. So this is just the most amazing thing in the world. It is certainly not something we would be able to afford for quite a few years and it is so important to us to have this family time.
Tonight I took the girls to the mall to get their ears pierced. I never thought it would be soooo fun!! I took my girls hand in hand and we walked and swung our arms, talking about our "girl power". They did so well (of course I had the secret EMLA cream---anyone thinking of getting their girl's ears pierce, let me know and I'll give you a dab or two). Abby went first and she was scared but it was so quick and she didn't feel a thing. Caroline said, "ow" but didn't flinch or cry or anything. They were in their feet pajamas and so incredibly cute!! Abby chose little silver balls and Caroline chose little sparkly diamond type studs (of course). We just had a blast! On the ride home, Caroline kept saying, "I just love earrings!". They are excited because they'll be able to change their earrings by the time we go to Disney and they'll be able to pick out some Tinkerbell and Cinderella earrings. It was so much fun and I enjoyed doing something so special with them.
Please take a look at the EVENTS page, I had Graham update quite a bit...And I promise in the next week, I'll get some new pics up.
March 10, 2008
I noticed some bruises on Abby's legs while I was putting on her tights this morning and I pretended not to notice them because the last thing I wanted was to go to the hospital again. They looked like regular kid bruises but she has been sick and did have a nose bleed last week so I HAD to call....we discussed it and reviewed her labs from last week...her Hematocrit and Platelets were low but not alarmingly low so the NP was on the fence about whether or not to have labs...but then she mentioned something about Abby's level of activity and maybe restricting it because the last thing we would want is a head injury (like falling off a slide or banging into someone at recess)...so I had visions of her bleeding out internally and decided to get the labs...Abby got home from school and when I told her she immediately fell into a tantrum. I haven't seen her do anything remotely close to this in a long time (since the whole night time thing). But this is what happens when she has a bad experience like she did last week; it just sets her back and it is awful. But she calmed down and she and I went for her labs. She was wonderful there and tolerated it well...they got a vein easily and we were in and out. So hopefully, she won't need any red cells and it will be a smooth week...See, there really ought to be another name for this phase...Maintenance makes it sound so routine and easy and we've had more unplanned trips to the hospital in this phase...
March 9, 2008
Is anyone else ready to move South??? We have been so couped up...between being sick and being tired, we haven't done much of anything! Abby is doing so much better and feeling well but she had to miss her Daisy event on Friday night and a birthday party today...I just didn't want to risk it...I feel so bad because she has missed quite a few of these types of things. She really doesn't complain about it though. She is afraid to get her ears pierced because it will hurt...I told her that having her port accessed, her back tests (how we refer to spinals), her labs, and her intermuscular injections hurt way worse...and she couldn't believe that. You should see the size of the horse pill she is taking for her ear infections...no kidding it is about an inch long and 1/4 inch thick and she just pops in on her tongue...no biggy...but she's afraid to get her ears pierced??? Go figure..
We went to Photography by Joanna's yesterday to have bunny pictures done...I really wanted to get Michael because I got both girls done for their first years and everyone said you'll never keep up with the third and I am here to prove you all wrong! When it comes to pictures, I will keep up. Michael was so cute with those little bunnies...they tickled his feet and when they hopped off, he hopped right off after them. Caroline just held on to them for dear life...she just loves animals and bugs and all of that outdoor stuff that God created for people other than me. I can't wait to see the photos...all 3 kids were fantastic. Joanna's work is always so incredible...I have the most amazing albums...
March 7, 2008
Panic....relax....panic....relax...did I mention this pattern before??? All I am really wanting is for 2 connected weeks where everything is smooth and I can work my schedule and have a nice routine..well, than and getting my "30s" body that I promised myself before my "30s" are over. (I have a birthday this month)...
Abby had vomiting and diarrhea yesterday and I thought for sure we'd end up a the hospital again and I cringe whenever that possibility enters my mind. Clinic is one thing...the ER is an entirely different story. The whole reason we got the port for Abby was so that things would be "easier"???? Her other option was a catheter that is on the outside and taped to the chest. There is more risk of infection with this type and she can't swim or bathe...doesn't it seem obvious? Anyway, Abby didn't have another fever although all night I dreamed that she was 106 and it wouldn't come down with Tylenol so I kept feeling her next to me and she felt fine. So I think she either has a little virus or is reacting to all of the antibiotics.
John's big inventory is coming up so he's been really busy at work which makes it even harder. I don't know what to do about my working. I love it and I need it (for sanity and for $$) but it is just so hard when you can't be a consistent, reliable employee, which I've always been. I don't want to let down any of the families that have trusted me with helping their children to communicate better. All of my outpatients come for weekly sessions and when their clinician can't make it for 2 of them, they're missing 50% of their speech therapy....I'm not sure what to do about it. I don't see my situation changing much for a while...I just don't know what to expect. It's my problem to deal with and figure out but it honestly just really depresses me. It's a whole other dynamic added to this situation that I didn't expect. I thought Abby would get to Maintenance and then life would resume and get smoother. In some ways, this time is much harder than it was in the beginning. In the beginning we were in crisis mode and doing everything we could to get by and now we're just left with what we're left with. Now I am not comparing my situation to a world catastrophe but this is JUST a metaphor...a hurricane hits and destroys part of your house. You put everything else aside in life to get your things together and take care of everyone...you get federal workers and help from all kinds of people...and then your house gets put back together enough to live in it but you are still left with all of the destruction, physically and emotionally. You think life is "normal" again but it will never be the same.
Don't get me wrong, I am still a very happy and thankful person who knows how lucky she is for all that she has in life from soup to nuts. I just have my moments.....
March 5, 2008
I probably shouldn't write right (thats a homophone!--brain still kind of working) now because I am just ALL DONE...just got back from over 12 hours of being at the hospitals and it was super emotional for me...long story short (do you really think I can do that??? It just makes me feel better to say it). Abby got a nose bleed at school yesterday and I was at work so they called John...he immediately consulted our handy dandy Pediatric Oncology Handbook that said if the bleeding stops, it should be fine but I remember that Abby had one in the summer and we had to rush her to the ER so I called the clinic and they would only be concerned if Abby also had a cold..."OH"...well, she does in fact have a bad cough and I had called about that previously to see what she could have for medicine because she will only take pills and nothing in liquid form...anyway, (see, long story short...) it wasn't urgent but she should definitely have a "respiratory work up" tomorrow (meaning today). They offered me the option of taking Abby to clinic but said that it would be fine to go local so I opted for that, thinking it would make everything easier. (Do you believe that I actually still think that there's a way to make things easier???---I'm a little tarnished and sarcastic right now). Audra and I had our first vendor sale booked at Heywood, I had Daycare arranged, and we had beaded our little hearts out to prepare for this so I didn't want to cancel...so here comes the help...Big Grandpa would meet me with Abby in Leominster so I would only be away from the vendor sale for about an hour while Abby had her lungs listened to and lab work...Well, we walked into the Dr's office, and wouldn't you know, Abby had a fever! So now, the respiratory work up had to also become a port-a-cath/fever/sepsis work-up (not sure of the "official" term). So we went to x-ray and waited a half hour but did get to see Robin and Jake which was nice. Then we had to go the pediatric floor so labs could be drawn and Abby could get IV antibiotics...of course this sounds so simple and at the time I thought it was...we would just go upstairs get the antibiotics and I'd be back at Heywood and able to pick Caroline and Michael up and have a normal day. But you don't just go to radiology, you have to register first and wait to register. Then after you go to radiology and all the way up to the floor, you realize that you also have to register at central registration which is all the way downstairs...then you go back to the floor and make sure that Abby has EMLA anywhere she might get a needle. Then comes the good old port....this part I can make short...they couldn't get blood return....the nurses were as nice and patient and kind as could be and they tried so hard to make this so easy for us but it just didn't work. So we got to the doctor's office at 10:00 and had to go to UMass at around 4:00 with nothing accomplished other than a chest x-ray and multiple needle jabs at my daughter. So we drive down to UMass and it takes 2 tries to get her accessed there...and we don't get home until 10:00! So she has a bilateral ear infection, clear lungs, good blood counts, good urine, and a mother with a broken heart! The poor little thing was poked and prodded all day long and I find myself telling the caregivers, "Oh it's okay, she'll yell but she'll let you do it and she'll be fine!"...and I'm supposed to feel good about that. She is a 5 year old little girl, my first baby, and it just plain sucks!!
So, how's that for a vent??? And I thought I was doing bad yesterday...my how your referent just changes over and over again. I am just so tired of smiling and having a sense of humor about everything...I feel guilty when I work, I feel guilty when I can't work, I feel guilty that my father drove up and down Rt. 2 a billion times today, I feel guilty that my sick sister had to pick up my kids and she's working full-time now, I feel guilty that Audra was left alone all day, I feel guilty that my mother feels bad and is trying to help me to figure out tomorrow...I KNOW all the logical, rational reasons that I should not allow myself to feel this way but no matter what you know, you still feel what you feel. I know no one "minds" helping and I know everyone loves Abby and that she comes first, I know all of this, but it is still hard to put everyone out all of the time. We have not had 2 connected weeks where I have been able to work smoothly without some sort of "mini crisis".
WOW!! I feel better already! All of my children are fast asleep and I have to keep myself from pulling that baby out of the crib and just holding him. That's what I want to do right now in the worst way...would it be bad if I walked really loudly up the stairs?? And he woke up accidentally so I have to go in??
Anyway, Abby will need some sort of follow-up tomorrow so I don't know what to expect and I just can't think about it anymore right now. Good night!
March 2, 2008
It has been a tough week...Abby felt awful just about everyday including right now...I had forgotten how much worse it is with the intrathecal Methotrexate...that's the one she gets every 12 weeks now when she has a spinal. She has had Zofran but it doesn't seem to help and in addition, she has a stuffy nose and a cough and it keeps her up at night. It is so sad to see her like this, it reminds a lot of the beginning...she just has no energy and cries frequently, saying, "I just don't feel good". She's been on the sofa most of the week and she missed quite a bit of school.
I woke up on Thursday morning to get ready for work and she just wouldn't stop crying, "I don't feel good, I don't feel good"...my heart was just breaking and I said to myself (in that moment) that nothing else was as important...if I lost my job, I'd find another one, but I'd never get this time back with my daughter....so I called Nancy (who as always was just us understanding as anyone could ever be---you are a treasure!) I felt so guilty and then I felt bad that I felt guilty and so the cycle continues....when Abby's sick like that she just wants me and I want to be there but it's much harder than I expected to find that balance now that I am working. I enjoy work and it is good for me and we need my income, but some days it's just way harder than others and I think that's just the way it's going to be and I have to accept that.
February 27, 2008
My baby has slept through the night for the past 2 nights and I just want to yell it out from the tree tops!!! It only took 8 months.....good thing he's so cute!!
Abby is not feeling so great but she went to school yesterday and made it until about 1; today she went to an assembly for "Pennies for Patients" at Squannacook Elementary in Townsend. My nephew, Ryan McCarthy, Mr. President, helped to organize and run this assembly, which educates students about Leukemia and raises money for the Leukemia & Lymphoma Society (which is an EXTREMELY helpful organization for people touched by these diseases). He invited Abby to come so Ryan could share her story and so Big Grandpa brought her in. He said that Ryan was unbelievable (I am not surprised) and that he ended his speech with, "She's going to beat this thing!!". He is so confident and I am amazed....I could barely give a speech in front of close friends, never mind standing up in front of the school at age 11. Great job Ryan!!!
The Lunenburg schools also participates in the program so we sent Abby to school with all of our loose change...it does add up...but I am happy to give anything to this group. They provide free materials and information, as well as some reimbursement for medical expenses.
Abby woke up frequently during the night but not "freaking out", just crying softly and telling me that she didn't feel good. She also was extremely bothered by my snoring and told me this morning that I should use nasal spray.
Finally, some decent looking men on American Idol!
February 25, 2008
It seems to have passed (shhh; you never say things like that aloud)...
Abby started her second session (not sure what to even call them but they're 12 week increments of time) of Maintenance today so she had clinic and spinal chemotherapy and Vinctristine today and she get her oral meds tonight....she will also start another 5 days of steroids. Mimi brought her today so I could work a little bit. It's the first time that she went without John or I but she liked going with Mimi because Mimi is a nurse and I think that makes her feel safe. She had to miss school which stinks but it is what it is and everything no matter how hard, could always be worse.
I am hoping with each time the steroids will get easier but to be honest, I'm not counting on it. The past week has been so nice (except the illnesses with my other 2) but Abby has been happy and sleeping well.
Ladies, just an FYI...I found this cool website instyle.com/hair. You can upload a photo of yourself and then "try on" all kinds of celebrity hairstyles and change the colors, etc...I found that I look much better with a golden brown color with one of Eva Longoria's feathery styles. Now, if I could only have her body.....
Try it, it's fun! Especially if you are like me and contemplate bangs every year. I hired Nancy to be my "bang person" (the one who insists that you don't want them no matter how much you think you do) but she left the position because I didn't use her effectively. And now you can print up the hairstyle you want and bring it to your hairdresser and she can't say, "Well you don't have her face!"
February 22, 2008
All is good! The baby spiked a fever yesterday when I got home from work and I thought for sure we'd end up at the hospital with an IV but after some Tylenol and a few hours sleep, he had the wettest diaper and I have never been so happy to change it. He's fine this morning, crawling and climbing and putting everything into his mouth, but most importantly, he is smiling and laughing and more like himself.
Caroline seemed to relapse a bit and fell asleep on the couch early but she's okay this am, too, playing with her sister. So for once, Abby is the healthiest person in my house. Who'd have thought???
I asked Abby about getting her ears pierced because her hair is starting to come in and I thought it would look cute...now usually, I'm not in love with the idea of little ones with pierced ears, but I thought it would be something special we could do and she would really get into it...but she thought about it and said, "I think I should wait until I'm more grown-up like a teenager"...very practical, very Abby.
February 21, 2008
Okay ladies...no matter how hard we may try to fight it, I think we have to attribute some of our emotional battles to our hormonal cycles!! But we can NEVER EVER admit that to our husbands because they will think that that means that it isn't real...you know what I'm talking about even if you're not comfortable with it.
So I tried AGAIN to go to work and I saw everyone on my schedule and made it in by 8:00!!! Dropping all 3 children off and commuting a half hour...very proud! But that's where the pride ends....unfortunately 2 of my 3 babies are still sick and I had to leave them anyway...I mean, they don't have Leukemia or anything (sorry, I developed a rather twisted sense of humor about the whole thing)...they're just regular sick when as a mom you just want to scoop them up and hold them all day but I couldn't...luckily my last patient canceled so I made it home early...so I got maybe 1/4 of my hours in this week...good going!
Michael has a fever and I am a little worried about dehydration so we'll watch him closely...Caroline is also still warm so we'll see how it goes....
February 20, 2008
I am in kind of a funny place right now...not funny like ha ha funny but funny like strange. I feel kind of done with everything. It's been months without consistent sleep and when I do sleep, I sleep so soundly that I dream and when I dream, I dream about everything little thing in my subconscious....and they are soooo real. It sounds crazy but it becomes hard to remember what was a dream and what really happened. Did I have that conversation in my dream? Or did I really have it? I'm not hearing voices or anything like that (I can just see everyone dialing right now trying to get a 51A written on me). I'm fine in the grand scope of things and I've been fine. It's just that every few weeks I go through this cycle again of feeling bad about Abby, feeling guilty about all of the help I've needed, feeling happy that Abby's doing well, feeling love and joy for my children, feeling frustration and impatience with my children, wondering when my husband and I will ever get time with each other...it's all of these "normal" things that get you bogged down. You can let it go and think positive but every now and then it just all gets to me. Just a bad day, you know??? Yesterday was that day for me. I have been struggling to get out of the house to work and I still haven't even come close to meeting my anticipated hours...and then I feel bad about that...Nancy and all of my coworkers have been so amazing and supportive but I still feel bad. I am so tired from my nights that I just don't have it in me to rush out the door in the morning. And right now I only have to do it twice a week! I had no problem getting my 2 girls as babies out the door 3 days a week and getting to work by 7, occasionally (it just took me like 3 tries to figure out how to spell occasionally---you see what my brain is doing???) 7:30 or 8:00 but I never really had a problem with this. Everyone tells me not to be so hard on myself, but I don't think I am. I have expectations and if you aren't going to try to push yourself, who is?? So, are you tired of this yet??? I am!! Complain Complain Complain, whine, whine, whine....not who I want to be...so VENT and there, it's out and I already feel better. Plus the Rising is playing and this song always instantly puts me in a good mood! See, it's the little things like watching my children sleep. Caroline and Michael have both been sick so I have just been watching them sleep. Caroline's hair is always a mess and in her face and when she flips her head around when she's sleeping, I have to constantly move it out of her eyes so I can see her pretty little face. Round little cheeks and just the softest skin. She sleeps so peacefully and it is just pure love. Michael sleeps with his little but in the air and you just want to slap it (you know what I mean, tap, tap, tap----put away the 51As!)....and Abby puts her hands behind her head. No one knows their kids like their mothers...no one.
Thanks for listening, it's been one of those weeks....I'm good!
February 18, 2008
Caroline still has a fever and the baby has gone hot and cold literally. Every time I touch Abby I am afraid she will be hot again and every time she is hot that means a trip to the ER and we could do without that. Let's keep our fingers crossed!! She had a night terror again last night, it had been about 2 weeks since she'd had one...WOW! I had no idea how good we'd had it. That's how fast you forget. Those 6+ (or whatever I lost track) weeks of her night time business was just about enough to make me lose all of my marbles and all it takes is 1 more night of it and I'm right back there. She is so smart, though...we were giving her her meds tonight and she kept telling us we were missing one. So we both checked twice, she had her 7 Methotrexate, her 1 1/2 Mercaptopurine, her 1 Acid Reducer...that was it. But she kept insisting that she got 9 whole ones on Monday and she was pretty adamant. Finally, she said it was "that little yellow one" and we remembered that we also usually give her a Zofran when she gets the Mercaptopurine to help prevent any nausea. She was right! She always is and we should never doubt her.
February 17, 2008
When one member of the family gets it, it goes around and sure enough Caroline awoke with a fever today. She was very snuggly...they don't make them much cuter than Caroline...(my biased mom opinion, of course!). She took her medicine (just like her big sister) and she beamed with pride when she was praised....she had a quiet day but never had any other symptoms..but IT'S GOING AROUND!! I think once we all determine what "IT" is, we will all be wealthy. So we missed Riley's 5th Birthday party, so sorry..and it was a Star Wars theme...so up Caroline's alley right now.
I am sad to report that an era of us supporting those PATS down in Foxboro has passed...they raised the prices SIGNIFICANTLY and it's just gotten harder and harder to go. We were happy with going to a few games but it's hard to ask someone to babysit your 3 kids (1 newborn, and 1 with an illness, and of course CAR, not pronounced like "car" but like the beginning of "carrot"--that's what Meghan and Abby call her, "CA")...for an entire Sunday. Plus parking prices and gas prices and blah blah blah....it was fun while it lasted...when we were just a couple of yoots. 11 years! Some of the best dates we ever had...Thank you Ernie for bringing us along for the ride!!!!
February 15, 2008
Abby's fine...she got home late and slept late...she snuggled up real close to me and I didn't mind one bit! She didn't go to school and I worked for a bit this morning. But she's been okay and afebrile. Panic and relax, panic and relax...that's the pattern.....
And now my 7 month old is climbing stairs!! God love him!
February 15, 2008
Just when you seem to forget that your daughter has Leukemia....Abby came home from school yesterday not feeling well. She was still playing with Caroline but as the afternoon progressed, she just stayed on the sofa and complained of a headache and not feeling well. A fever and/or a headache are 2 things we are supposed to call on right away (that was the information provided in our pediatric oncology handbook----isn't it nice that this club has a handbook? :) Anyway, I couldn't find a thermometer to save my life and John's cell phone battery was dead. He was at a meeting in Connecticut. Isn't that always the way...I have absolutely no problem reaching my husband a million times a day when I have stupid little questions to ask but when my daughter's sick it happens to be the one day I can't reach him and I don't know where specifically he is. And I have been tripping over thermometers left and right for the past year. I feel like I've put one everywhere, the junk drawer, the medicine cabinet, the baby's room, my dresser drawer...and now they were no where to be found. I called the oncologist on call anyway and was told that if she had a fever, she had to go to the UMass ER because with her port there is always a risk of sepsis. So I finally reached John and he came home with a shiny new thermometer (I will glue it to the bathroom mirror) and confirmed the obvious. So off they went. They got home sometime late, I really don't remember and she is just getting up now. I don't know all the details yet but she is okay because they didn't keep her. It is a reminder that at any given time, we could be fighting a bigger battle. When your child has a fever or is sick you feel bad and often have to make tons of arrangements to either get them to the doctor, call out sick yourself, arrange daycare, whatever...but with Abby it's different...it can be serious and I get a pit in my stomach every time.
February 13, 2008
Abby's labs came back great this week so she is on 100% of her chemotherapy. Now, did you ever think that that sentence would make you happy?? It just rolls off the tongue...."my daughter can have 100% of her chemotherapy". Wonderful...I will just go sort her pills and put them in their proper am/pm containers. Very routine...very normal....well, define "normal". I always liked being a little above the line on the bell shaped curve....now I'm not sure where we would fall. Either one extreme of the other....probably something like 5 deviations from the norm. And we're okay with it. See what having Abby not having night tantrums has done to me?? It has flat out put me in a good mood. I always have that little itch inside me, though, wondering how long it will last. It's hard to live like this so I am trying trying trying my best to enjoy the little pieces of happiness and make them seem HUGE because they really are in the grand scheme of things. But it's easy to talk and write this way than it is to execute. It's the same with dieting...I know what I need to do and how to do it, but the execution is where I'm off...I feel like Tom Brady...he's always talking about executing the plan. So that is my new goal...EXECUTE the plan.
On another note, Audra and I are going to be putting more effort into our business, AnnLynn Designs and while it may not be appropriate to use this website as a forum to talk about it, I am over what is appropriate and inappropriate...many of my "rules to live by" have changed in the past year, anyway. So we are going to have our first vendor sale at Heywood Hospital on Wednesday, March 5th from 9-3:30. We will also be looking to show at a few fairs, and book some home parties. So here's my plug for us: If you work in a facility that hosts these types of vendors, please let us know. Much appreciated!
February 11, 2008
I've been slacking lately....so many thoughts on the brain, though. Like how can you have such a bipolar relationship with your children? Now I do not mean to minimize or make any statements about anyone who truly has the condition...I am NOT Tom Cruise...I think that there is so much benefit to be had by medications and how they can change peoples' lives. I don't mean to pick on Tom Cruise, either, because I like to think that I can respect others' beliefs no matter how different they are from my own. And to think, he once had me at hello...Now it's agent Danny (I don't even know his last name but YUM!) from Without a Trace...Okay, way off track...my point is that one of my most favorite times of day is also my most dreaded...it happens around 5:45 am, sometimes 6:30 if I am lucky but my baby is ready to get up so I must drag myself out of bed, leaving behind my 2 sleeping beauties (John has already left for work) and go get him. I can barely open an eye and he is hanging on the side of the crib bouncing up and down, babbling and smiling as if it were noon and I had already had 2 cups of coffee. I am CRANKY beyond belief and then I see his 2 little teeth and his big smile and it all just goes away...INSTANTLY! Now that's the stuff they ought to bottle....And then, there's Caroline, who has already asked to play Lego Star Wars 27 times and it's only 9:00. "Be strong, Kelley, you can do it...you can wait her out...you can win this one!" And then I take her to the grocery store and she makes up all of these songs in the back seat, without any music whatsoever...and I hear her say, "Mama did you like that song? Wasn't it beautiful?". She has no idea...YES it is the MOST beautiful song in the world...she is no longer the girl who whined for an hour because I set some rules up...she is this smiling, adorable, curly haired sweet thing that I just want to scoop up and squeeze. In a moment, you forget about all of that "stuff"...the stuff that makes your mother say things like, "you never cried like that" and "my kids were always good", "my labor wasn't painful at all"...because you FORGET the bad stuff.
Last night I came home to find my little girls playing in a house filled with tiny little white styrofoam balls. They had found a piece of the square block of it and were ripping it into tiny pieces. This turned into quite a mess...the little white balls were stuck to their clothes, their hair, the furniture, and the dog. It was EVERYWHERE...I was soo mad! Abby said, "I'm sorry mom. Caroline did it first and I tried not to do it but it just looked like so much fun! I couldn't help it." I had to laugh as I was vacuuming for the 13th time today and still finding white balls....it did look like fun. Seize the day...the lesson that is the hardest to learn...I am still trying to find the right balance...being real and living for the day...it's a tough formula and whoever finds it, will be wealthy beyond belief and I don't mean in the fiscal sense, although, that's probably a part of it too.
February 10, 2008
We celebrated Meghan's 5th birthday yesterday! WOW!! I can't even believe that she is already 5. She is my only niece and I just adore her! She is a good friend to my daughters but she also has this inner spirit that you just can't help but fall in love with. When I think of Meghan, the word "EXHUBERANT" immediately comes to mind. And I wasn't sure why because I didn't know exactly what that meant but it seemed to fit. So I looked it up in the dictionary (remember those??? We used to have dictionary bees at school and I always won). The definition of exuberant is "full of unrestrained enthusiasm or joy.... enthusiastic, excited, energetic, high-spirited, cheerful, lively, boisterous ..." Hit the nail on the head!! I love you Meghan for all that you are and will be. The sky is the limit for you!
Abby continues to do well at night! I am so thankful! We have been able to have a bit of normalcy around here.
I finally got to drive that car and WOW! It still smells new...my car smells like juice boxes and french fries so it was quite nice. I am still just blown away by that car! I felt like we walked out of our house and directly onto the stage of the "Price is Right" and Audra was holding the keys, saying, "A New Car"...just like Bob Barker. I feel so much better with John driving back and forth to Worcester in this weather. I was always just waiting for his car to break down and it just feels so much more safe.
February 6, 2008
Abby's ANC went way up on Monday's labs so she is doing good. We have to double check again next Monday to make sure they don't dip again but she was able to resume her chemotherapy this week. The Ativan has been helping substantially---there have been no outbursts day or night since she's been taking it. You have no idea what a difference this has made in our lives. For basically over 6 weeks, Abby had some sort of a daily meltdown,usually in the middle of the night and we were just all falling apart. I felt so helpless and out of control. Watching my daughter go through this has been extremely painful and frustrating. She continues to come through and maintain who she really is inside and she is a lovely little person. That has been the worst of all of this, is when she is not herself. I have just missed her so much.
Ativan can only be used a few days at a time though, so last night we didn't give it to her and she was fine....so hopefully, the cycle has been broken! We'll keep our fingers crossed.
Today is Abby's 100th day of school (for her it might be more like 50). Nonetheless, she is bringing her beads of hope in for her "100" items. She had earned 85 already...she gets beads for each procedure or treatment she gets at UMass. Becky gives her a the beads to add to her necklace that was given to her early on in her outpatient treatment. I can't believe how long it is...it has been almost 10 months since "D day".
Yesterday was Mimi's birthday...the big "60"! My children are so blessed to have their grandparents so close to them. They will cherish these relationships for the rest of their lives.
Here's another little helpful information for moms....Baby biter biscuits stain even when using OxiClean....and dogs do not like them.
February 4, 2008
Go Celtics????? Aren't we all just really happy deep inside for the Manning brothers?? What 2 boys get to share such joy? No, really, poor Eli would have lived his whole life in his brother's shadow.
February 2, 2008
Well good news to report....the Patriots are in the Superbowl! Have you heard? And did you know that Tom Brady was dating Gisele Bundchen?
Abby has slept without incident for the past 3 nights!!! IN A ROW!!! WHILE ON STEROIDS!!! She has woken up to pee and to eat (something healthy like a banana or an apple) and that's it!! No tantrums or pain or carrying on. AHHHHH! Hopefully the Ativan will help to break the cycle....Michael is not doing much better but we've been weak...I just can't seem to let him cry it out. He is just 7 months old and he is pulling up on furniture and moving around! He already lets go with one hand! We watch him and laugh because he's just too little to be doing all of that. Proud as punch, though, you should just see his cute little face!
Go PATS!!!
January 30, 2008
What is sleep anyway?? Do we really need it? Maybe I am barking up the wrong tree and just need to go to Jordan's. Maybe the sleep technicians can help. I've tried everything else....nurse practioners, oncologists, child psychiatry, physical therapy, pediatricians....maybe we need to go see an acupunturist??? Maybe none of us here (except Kramer) have our sleep number right???
Abby's neutrophils were low on Monday so she can't have her chemotherapy this week, but she was still given the Vincristine and will still have her Steroids (major league baseball definitely wouldn't approve)...so needless to say, but I am anyway, last night was horrible, one of the worst yet. She had another little "roid rage" episode and was just grabbing at her knees and literally trying to kick the pain out of them. She was also saying things that didn't make sense ("I want to color the big penguin") but answering my questions appropriately at the same time. (She did her book last talk in school this week on a story about a penguin). I managed to force Advil PM into her (she threw the cup of water across the room)and after a while she settled down and I had to carry her upstairs (Why aren't I thin with huge muscles???) She slept for about an hour before she woke crying in pain again...I am just at my wits end with this whole thing...I feel like we re-grouped last week and established some goals and were working on them well and then "Poof" all gone...1 step up and 2 steps back (A little Bruce never hurts :)
So back to the drawing board with the staff at UMass....we are going to try Ativan but of course that can't be called in so we'll have to go pick up the script tomorrow and then have it filled. I am not crazy about more meds but something has to break this cycle for her. SHE needs to sleep, not just us. And she is really scaring poor Caroline...we're seeing some anger in her and she is such a sweet, loving little girl. So we'll see what happens...
Michael had his well visit today and had 4 shots, he has been miserable ever since so my mom again to the rescue...she came and held him for a while for me because he wouldn't let me put him down. And that is just not like him...
So just another day in the life....
On the bright side...GO PATS!!!!
January 28, 2008
Abby and John are at clinic now...boy, those 4 weeks sure went by fast! Today, she just gets the vincristine through her port and this is the stuff that makes her knees and legs hurt a few days after. In addition, she's back on the steroids this week :(
She'll also get the 6 MP and Methotrexate tonight and she tends to feel sick the following day/night. I really don't know what to expect anymore so we'll just take it one step at a time.
John and I sat down and set some goals for trying to put our household back together. With all of the night-time stuff and the steroids, we've had a really hard time with discipline (knowing when it's behavioral and when it's really pain) and having any kind of routine with food. Obviously since Abby's on the steroids again this week, we'll start addressing the food thing after that. So we decided to start with bedtime and getting the girls to go to and stay in their beds....no playing in their rooms, no asking for drinks/food/etc. This part has usually been okay for Abby because she's so tired at night but Caroline will do just about ANYTHING to avoid going to bed and we've not been good about disciplining because we've been so tired ourselves. So we have had 3 good nights in a row with the girls seeming to understand the first goal of our multi-faceted plan. The other big thing we've been working on is trying to get the baby to sleep better at night. He's been getting up about 3 times a night and we've basically broken all parenting 101 rules and just tossed him a bottle...so now we're tyring to "Ferberize" him but slowly and gently. Boy can that kid scream!!! He's been getting up twice a night over the past few nights and I've just gone in and rubbed his back and say, "night night Michael, night night" and then he sreams bloody murder so I give him a bottle with 2-4 oz. We'll start watering that down soon.
Abby has been doing much better at night, no pain meds and no tantrums...of course, she'll have the strongest teeth in
America because occasionally I use flouride as a placebo. Caroline, however, has been waking up screaming...I just can't win. Anyway, it's getting kind of better.
GO PATS!!!
January 25, 2008
Oh, by the way, the deer and my sister and her family are all okay.....
This is also HUGE!!...It’s already Thursday and I’m just getting the rest…THAT'S the kind of weekend we had!!!
If I haven't said it before....The folks and the community that are in and around the Lunenburg Primary School are the most AMAZING (someone help me with some new words---amazing just doesn't cut it anymore) people ever! Thanks to Courtney Zivojinovic and Steve Robinson of Peritus Contractors, who’s kind and generous donation lead to the amazing sale of abbysangels bracelets, which were sold school wide!!!! Abby and Caroline’s favorite colors swirled together (purple and blue). The school’s response was just incredible which tells me just how wonderful this community is…not to mention all of the businesses who donated items for the raffles….these places much just get hit up all the time……..Thank you to Sandy Flanagan who has been knitting Abby hats since the beginning of the school year, and to Ann Brisson, who made Abby some heating pads (we CANNOT live without these at our house). Thank you to the principal for supported all of this and for hiring such amazing (there’s that word again!) people to take care of our children. I never thought in a million years that I would be so comfortable sending off my 5 year old for the day, never mind a sick 5 year old. But because of all of the warmth and kindness, I don’t bat any eye when Abby goes to school. This experience is INVALUABLE at this time in my life…to know that she is safe and cared for and loved while she is learning and making friends without her mom around is priceless. So thank you to all and especially Deb (Mrs. Z) and Monique---you have a gift and you’re using it right where God intended it to be used….our children are blessed and lucky to be in your class.
January 23, 2008
I've got a few updates today because there is just so much going on...this needed it's own section because it is so huge!!
On Saturday, John and I were taking turns napping while the other one watched the kids (It had been a rough few weeks!)when my father, nephews, and niece ran into my house, talking all about how Kerry had hit a deer and that I needed to come outside IMMEDIATELY. I had just gotten out of the shower and hadn't even combed my hair...I stepped out of the house and all I saw was Mike with a video camera....and then I saw my mom, Audra, Kourtney, Julie, and my sister all standing there....I knew something was up so I walked back into the house and told them to put the camera away so I could go comb my hair. At first I thought I was on "What NOT to wear" but then Audra handed me keys and showed me our new car...ARE YOU KIDDING????? I still haven't processed it. I looked to the weakest link in the group...someone had to know SOMETHING!!! No one would budge..."It's ANONYMOUS" they kept saying...so I sat in it, telling them, "I can't except this"..."please tell me who did this"...None of them would tell me anything except that it wasn't them who did it. Audra said it was someone who had good fortune and a kind heart and that they contacted her and wanted it all to be anonymous. John came out shortly after and just looked puzzled....(not a tough look for him:)....he couldn't process it either. Anyway, the dealer picked up our sad little 2001 Hyundai yesterday and replaced it with a Pontiac G6 (I think I got that right).....John has never ever had a new car...anyone who knows us knows that we never buy nice cars; we'd rather put our money into our home where we live rather than where we drive...so this was just AMAZING...I remember early on I was looking for synonyms for "Thank you" and now I need some for "AMAZING"....whoever did this, you must read this....You are an incredible, amazing, selfless, generous, kind, thoughtful, and caring person with a HUGE heart. We weren't sure what we were going to do because that Hyundai wasn't going to last much longer and my van needs to go in the shop soon. Everyone says that God has a way of providing just what you need when you need it. Ain't (I don't think I've ever used the word Ain't) that the truth!
I still haven't processed it....
January 23, 2008
WOW!! What an amazing weekend!!! Much needed; I had a blast...starting with the comedy show and ending with the PATS game. I don't think I've laughed and smiled that much in a long time. Thank you to everyone who made that possible and I enjoyed visiting with everyone so much. The biggest deal of all was that I actually stood up and gave a speech! Well, I read off my paper, but still it was a SUPER achievement for me! I haven't given a speech since Freshman English when I was being graded. About 10 minutes before we left for the show, I sat down at my computer and wrote from the heart...it was short but what I wanted to say to everyone...so if you couldn't hear or follow me because of my inability to perform in front of an audience...here it is:
"Hello and thank you all for coming….I am not a good public speaker and avoid it at all costs but when I started to think about tonight, I realized that I had some things I wanted to say. Forgive me for not being articulate, I just sat down before we came and wrote what was on my mind. I haven’t edited or re-read so I can’t be held accountable for my rambling."
"First of all, thank you to the kind folks at the Harley House for donating the space and opening your doors for this event. Thank you to the comics…what an amazing and kind thing to do! I am realizing more and more how many wonderful people there are in the world."
"I am not quite sure what I want to say because it just doesn’t ever feel like enough. You can’t imagine how much all of your support has meant to us. Sometimes, it’s just a knowing glance from another mother…sometimes it’s a warm meal when we’ve had a tough few days, sometimes it’s a donation to help us with expenses, sometimes it’s a card to say I’m thinking about you, sometimes it’s a prayer….but most of all it’s the knowledge that you all exist and the comfort that we feel in your presence, in whatever way you’ve made it known to us. What I began to realize as I got older and became a parent myself, was there was no way truly thank my parents for all they had done and continue to do for me. All I could tell them is that because of what they have done their whole lives, there grandchildren will have better parents because of their model. That is what I want all of the kind people who have supported us to know…that we ARE and WILL be better people because of you. There is some sort of saying about “guilt by association”…I think it’s perfect…we are all “guilty” by our association with each other…guilty of having love and faith and kindness. It is contagious and touches everyone around you…okay I know I’ve been rambling…."
"I want to say a very special thank you to Audra, Julie, and Kourtney for all of the time that they have put into this event. You girls are truly special people and collectively I’ve known you for 66 years…we were initially friends because of Geography, Sports, and Dorm room placements…now we are tied to each other because our friendships have grown and expanded and deepened through the years. I am so blessed to have so many wonderful friends."
"Audra, there aren’t even enough words so I can’t even go there right now…."
"Graham, stand up, if I can stand here and talk, you can stand up! This is the website creator…please give him a hand. It is because of him that I’ve had the forum to write and it has been the least expensive therapy money can buy!! Thank you!"
"And back to why we are all really here…Abby…to know her is to love her and I am not just saying that because she is my daughter. She is an amazing little girl and no child or adult should ever have to have this experience. She continues to do well, thanks so much for you support. I love you all!"
January 18, 2008
Well, I've been a week off this week, I thought the 28th was Monday but it's the following Monday that Abby will return to clinic. We've not given her the PM medicine in a few nights and she hasn't woken with a tantrum but she still wakes up several times during the night, complaining of various things ("I just don't feel good", "My knees hurt"). So I don't know what to do anymore about it. She's had a couple of these "pain tantrums" (I keep renaming them because they keep changing) during the day now so who knows?? I met with a child psychiatrist this past Wed and he was extremely nice and easy to talk to, although I can pretty much talk to anyone, never mind someones who's paid to listen. Maybe if I got paid to talk then there would be no financial worries ever!! :)
So I am going to proceed with meeting with this Dr. Abby will come with me to the next visit but it will take a while for him to get to know us. It was so hard to cram my concerns into an hour. You really do need to get the whole picture. In any case, I don't see us solving this nighttime problem any time soon. And I am soooo done with it.
I thought of a couple of more tips and I am going to keep recording them in case us mothers do get together some day.
1. NEVER EVER buy FLOAM!!!
2. "Washable" means it's only really washable if you spray it with oxyclean, use on a clean surface, wipe right away, and don't mind if your kids hands change color.
3. Use sippy cups at least until age 12, I don't care how silly they look, no matter how hard they try with a "big girl" cup, there is always a spill of some sort.
4. Don't furnish your house until your children go to college (Except of course, the wall to wall bed). If you do decide to furnish it, pad all of the walls and floors and only buy plastic furniture so you can just put it through the dishwasher.
5. Webkinz will burn when thrown into a lighting fixture. We still have little pieces of webkinz rabbit stuck in a chandelier that will not hold a lightbulb anymore.
6. Girls are just as bad, if not worse, than boys when it comes to making messes, getting into things.
7. Remove all pens, pencils, scissors, crayons from your house until your children are all school aged. Let them get that experience at auntie's.
8. That goes double for sharpie markers.
January 14, 2008
Look at all of this snow!! And do you know what my girls are doing?? They are in their bathing suits playing with their babies, pretending to be a the beach. It's really cute except that they're using Michael's bottles for flotation devices....it's really nice to see them play this way. I was supposed to have a tooth pulled today but it looks like dentists aren't "necessary personnel", which is funny because as a speech therapist, I actually am....hopefully, they'll arrive sometime today and I can just get it done.
Abby's doing well with some of her hair coming back but it's coming in brown. She's happy about that, though, because she wanted her hair like mine and Caroline's. She's hasn't woken crying in a few nights but still climbs in with us, which is fine; I've learned to deal with that but it would be nice to get down to just one child next to me at night. I am not sure to "risk" stopping the PM medicine but I don't want to keep giving it to her either. She'll go to clinic next Monday and start another cycle of steroids so I'd rather wait until then. I don't know if I'm brave enough yet...it's been nice to have a few tantrum free nights. In the meantime, we have to gather the strength to Ferberize Michael. I remember with Caroline, the pediatrician gave me a "script" to bring to John, telling him to have me go away for a few nights while he "Ferberized" her. For some reason, it's a little easier for him to let the baby cry it out. That's not to say he's insensitive, I would just give in before he does. And when you Ferberize, it's like the Atkins diet...just one little slip and you undo all of the good work you already did, in an instant!! Anyway, Michael is 6 months old and he has only slept through the night once! Granted, his sisters come barreling down the hall screaming a few times a week, but still!
Anyway, GO PATS!! It was a great game...the playoffs are always so electric...there's just a buzz in the air and it's like for one moment, so many different people have gotten together in harmony for the same cause. Yes, it's only football, but it's still a nice feeling. Everything in life doesn't have to be so serious.
January 11, 2008
I know....2 updates in 1 day!!! Something must really have happened for that!! Or I've got nothing better to do than sit at my computer all day....
My baby is a full-blown crawler now!! I thought I had at least 2 months, I mean that's the guarantee, right??? You are SUPPOSED to have 2 months with them sitting nicely on a blanket playing with toys...as we speak, he is already opening and closing doors and exploring the stairs. He is ONLY 6 months old!!! Maybe all of this gross motor activity will make him sleep better tonight...sure it will...gotta go chase him!! See you later....
January 11, 2008
It was a rough week personally....it started off great, with a good day back at work and Abby had slept without terrors a few times. But on Wednesday, my poor little baby Michael got a plastic hanger stuck in his mouth. I thought he had punctured it right through his palate but there was no blood so I knew that couldn't be the case. It was stuck in there good, though, and I thought for sure we'd be calling 911. I was able to get it out and there didn't appear to be any damage, other than a scared little baby and a mother full of despair. He developed a fever later in the day and was loafy....content to be held without playing or anything...I was pretty sure it was unrelated but you never know; maybe a tiny piece of plastic broke off and he aspirated it...he was breathing fine and vocalizing fine so I knew there was no damage (sometimes it hurts to have a little medical background and sometimes it helps)...in any case, he was up all night and I ended up unable to go to work on Thursday. I feel so super unreliable and inadequate as an employee and as a mom. It has been so hard to give my children all that I want to give them...the nights just make me so tired and with Abby's steroid routine it feels like we just let everything go for a week and a half because it's out of our control and then we spend the next 2 weeks trying to get our routine back, only to be faced with the steroids again. I've got to find a way to deal with those nasty little pills.
A funny little anecdote...I was relaying to John about how I had made an appointment at the vet for Kramer and Abby was listening. She asked me what was wrong with Kramer. I explained to her that I didn't know so that's why I was taking him to the vet so we could find out. She paused a moment and asked, "Mom, does the vet speak dog?"..John and I just roared...It's so funny how they think.
Anyhow, GO PATS!!! It's been nice having that right now :)
January 9, 2008
Another good night for Abby, although now I can't seem to get her out of my bed...usually when the steroids were done, she would return to her bed. Oh well...I've learned to sleep on my elbow wedged between my 2 girls....we get half the bed and John gets the other half. Monday night, after Daisy's, Abby and I slept at my parents, thinking if John had Caroline and the baby I could get a good night sleep before my big day at work...Abby had slept all night for 5 nights in a row (thanks to Advil PM) so I thought we were all set. Anyway, Abby woke up around 10:30 and was screaming and grabbing at her knees, crying out "It hurts, It hurts!!!" She was so upset and I've become pretty immune to this at night (unfortunately or fortunately, it depends on how you look at it but I've had to try to shut it out) but this time it just hit me and I began to cry. This only makes it worse because she sees me cry and that makes her more upset. It reminded me of one of her first nights in the hospital when Kerry and I were there together and she woke up much the same way. There was terror in her eyes and very obvious intense pain. In the hospital they gave her Morphine and it worked immediately but the whole episode took 20 minutes and I remember it being the longest 20 minutes of my life. I was alarmed at that time because we were going to be taking her home and I thought, "there is no way I am taking her home without Morphine"....they assured us that her pain was due to the Leukemia (the cells divide and crowd her body)and that we shouldn't need the morphine again.
I began to think, what if the Leukemia is back (I KNOW that it isn't because they test it during her back tests). These are the thoughts that drive me crazy and I don't have them that often. But she has been crying in the night for a long time and we just keep assuming that it's her anxiety of dealing with everything but what if we are overlooking something? She's my daughter and I should know her better than anyone else and I should be able to have instincts about this but it's just so hard to know. My gut is that her waking up is a combination of real pain, at times probably worse than others...and anxiety coming out in night terrors or dreams. I think it's kind of like the "which came first the chicken or the egg" scenerio...meaning that sometimes I think her night terrors wake her up and then she feels pain and sometime she feels pain and it wakes her up but she is sleeping so soundly that it causes this "terror" type reaction.
Anyway, yesterday was a good day back at work...I saw a few adult stroke patients, a few infant hearing screenings, and couple of swallowing evaluations, & some preschool aged evaluations. It was a well rounded day and I enjoyed it. Very interesting caseload and I am looking forward to working with some lovely people. I know I am rambling now but I can't imagine what it must be like to lose your ability to communicate, even if it's just in a subtle way. I release by venting, writing, and talking, and I just imagine not even being able to hold a conversation with my spouse or friend. That's one of the reasons I went into the field I did and every now and then I need to step back and really think about it.
January 7, 2008
The biggest piece of advice that I can find for young couples starting out (yes, that means that we are no longer a young couple...we are a wiser, more mature couple...just like I am not overweight there is just more of me to love...it's all perception) anyway, my advice is to get a king size bed...no get the biggest bed possible; in fact, get a wall to wall bed and have a little fridge and microwave built in...and a storage spot for diapers, medicines, and pull-ups)...have the mattress COVERED in plastic and always have an extra sheet handy....this way, you'll never have to go downstairs in the middle of the night....or just have a first floor master and put all the kids upstairs so you never know what's going on and therefore, don't have to worry about it. Even the best of us have ended up with our kids in our bed....it just happens...even if you enjoy it for a period of time, don't ever let it happen; not even once... if you are not ready for a lifetime contract. I think us mothers should get together and record all of our little pieces of "advice" and publish a book for new mothers...we could call it the "What to REALLY expect" when you're expecting. Like if you call the doctor's office with just about any set of symptoms, you'll hear "It's going around"..it never stops "going around" and it keeps coming back! Milicone drops do NOT work...try gripe water, no wait, that doesn't work either. Always, have 2 sets of clothes ready for work because inevidably what you think you're wearing will end up with snot or spit up on it right before you leave the house....trying to set your mind to be ready a half hour early is NEVER enough time...The bag you pack to keep them occupied is never interesting to them....getting things ready the night before doesn't work because you're always too tired the night before...you WILL use bribery even if you swear you never will....see I'm loaded
with them.........And my kids are even past Kindergarten yet...
January 6, 2008
Abby finished her steroid week with flying colors...much less "meanness" than in the past but still a few moments that we could do without. It's so easy to know it's the steroids but it's also easy to forget and get mad at her...that's the hard part for sure; it's not her fault. Her appetite has been out of control and again I struggle with trying to find a balance for Caroline. She tends to follow her sister's schedule (although she doesn't eat nearly as much) and it's hard to get into a mealtime routine. We work so hard on it for 3 weeks and then it goes out the window for the steroid week. Michael started eating now, so that should help because he definitely needs a routine to be established...especially so he can get off that expensive formula. It will be so nice to have him smell like pureed peaches..I can hardly wait; rice cereal for now...yum yum!
Speaking of Michael, we finally had him Baptized today; it was a very small ceremony and went very well. We had canceled previously because of Abby so it was great that she could come and be a part of it. We asked Ryan to be an honorary god-father with his parents because he has such a connection with his faith and really understands it. He is also an amazing role model and thought it would be nice for Michael to have that bond. We are so proud of you Ryan and just know that you will be an wonderful young man!
January 3, 2008
My first day back at work!!! I only lasted about 4 hours...well, actually, that's all I was scheduled for and it was just the right amount of time to get back into it..thank you Nancy for knowing that about me!! It felt good to be back....much better than I expected. By the end of February I should be back to "normal". Boy does that word have new meaning!! I enjoyed being "professional" for a while and for me, I have always needed that balance.
Abby's clinic visit went well this week; she got the Vincristine again and that always bothers her; it makes her belly hurt and gives her joint pain. Yesterday, she had her physical therapy evaluation and it just plain didn't go well at all! She wanted to have nothing to do with it! I was so surprised by her reaction....we had talked about it quite a bit and it was at a familiar place for her...it just was awful. She screamed, "No", several times in a mean voice and she even tried to kick the PT. It just wasn't like her at all and it reminded me of how she was the first few weeks in the hospital when she first got the steroids. The hardest part about it is that I want people to know the real her and not the steroid her...it's easy to try to explain but if you haven't met non-steroid Abby than you really haven't met Abby and let me tell you, you're missing out! Anyhow, through discussions and a little informal observations, it was felt that she doesn't have any major weakness of physical problems that are likely causing the night time problems. I didn't think there was but we just wanted to cover our bases. So back to the nurse practioner I went and this time we decided to try Ibuprofen with a PM component. Last night was the first night that Abby slept so peacefully. She was right next to the the whole night and she only woke up twice; once to go to the bathroom, and the other time to get a snack. Both times she was independent and not disruptive at all! It was nice...............
1 more day of steroids for this 4 week period....
January 1, 2008
Happy New Year!!! To me, embracing the New Year is a time to look forward to new beginnings but also a time to reflect. 2007 brought me 2 major things in the scheme of life...both at the extreme opposite ends of the spectrum. I was given the gift of a healthy baby and I was also given the gift (yes, I say that now)of a strong 5 year old who is fighting a terrible disease. With Abby's diagnosis came fear and sadness but so much more has come from it. I have reconnected with old friends and acquaintances, met new people, strengthened the connections with those who are already close.....I have learned what it really means to be a mother and a wife and I have learned a great deal about myself. But most of all, I have been given the greatest gift of all....the knowledge of how to look forward to help others. My family has been touched by so many random acts of kindness...and others very purposeful and planned...all from the very smallest sentiment to grander gestures have meant more than you will ever know. It took me a long time to really accept all of the help, even if I accepted it on the outside, I hadn't really accepted it internally because I felt guilty....guilty that I needed it and guilty because I didn't feel like I could thank anyone properly. Not properly in the rote sense of manners but so that what I felt in my heart was truly reflected in my words. And I don't know if that can ever really be done. But it is reflected in my daughter's smile when she is feeling good and when she gets older and can really grasp all of this, I will make sure she knows what it means to be kind and helpful to others in the way that others have been to us. It has been an amazing year with such a roller coaster of events.
Happy New Year and GO PATS!!!
December 30, 2007
Great game!!! Go PATS!!!! I gave up my best opportunity for sleep to see the game and it was worth it...and then, Abby slept through the night!!! It's been a tough few weeks but it's just going to be that way; ups and downs...she returns to clinic tomorrow and will start another 5 days of steroids. She has her PT appointment this week, as well, so we'll see what happens. She has been playing happily with her sister and cousin. Uncle Sean took them sledding this week and they enjoyed that. Abby will also start taking the bus again and she is excited for that. It means we'll have to get everything together an hour earlier in the morning but I think we can do it. I will be "easing" into work this week, also...starting for a few hours on Thursday and then returning to my usual (??) schedule the following week. John will be home with the kids on Tuesdays so I don't have to worry about getting them out of the house for my long day of work. I think I am ready in some ways and in others I am scared to death. On Tuesdays, I work 11-12 hours so it's a long day and I'm not ready for that, but on the other hand, I am quite ready to get out of the house and stimulate the intellect a bit. It's always been a good balance for me to split my responsibilities that way. I am just worried about being at work if the school calls or when Abby is up at night...it is me who she will want and I shall be there as much as possible. I don't know how I would have worked during the past few months so I am extremely thankful and grateful to so many people for helping us....I have no idea how we would have done it. On Thursdays, my mother will have the kids for now and that also puts my mind at ease. My daycare provider retired (good for you Rose---enjoy it!!!) and I am just not ready to bark up that tree yet...so we'll get by for now and figure it all out soon. I will continue to do per diem testing in the schools so we should have everything in a routine by the end of January. I can't believe it has been 8 months since Abby was diagnosed! What a whirlwind!!! My baby is now 6 months old and cutting teeth and "scootching" across the floor...time just flies; sometimes for the better and sometimes for the worse.
December 27, 2007
Hi everyone.
My name is Audra Sprague. Most of you know me, but for those of you who don’t I am a friend of the Laine’s. I am hijacking Abby’s site to give you some information on a fund raiser I have scheduled for January 19th. It will be a fun time and we would love for everyone to come out and help us support the Laine Family. All the details are listed below. Tickets are limited so don’t miss out.
Comedy Night Benefit
Saturday, January 19th, 2008
6-9pm
Dinner from 6-7pm
Comedy Show begins at 7pm
The Harley House, 909 Massachusetts Ave, Lunenburg, MA
All proceeds to benefit
The Abby Laine Fund
$30 per ticket (includes dinner and the comedy show)
To purchase tickets please contact:
Audra Sprague
978-345-3993
978-502-5591
audrasprague@comcast.net
Comedians include:
THOMAS MITCHELL
Seen at Boston Comedy Co., North Shore Comedy Productions and Laughs On Us Comedy Clubs! Heard on ROCK 101 WGIR Radio! Avid Performer for “Comics For A Cure”! Numerous cable TV show appearances! Voted “the funniest person in NH”! Just back from New York!
BOB SHEEHY
Seen at Nick’s Comedy Stops, Dick Doherty Comedy Productions and Boston Comedy Co. comedy clubs! Numerous commercials! Has performed in clubs and colleges throughout New England and the entire east coast! Appeared in movie “Celtic Pride”!
JERRY CARUSO
Co-founder of “Comics for a Cure”! Actor for Murder Mystery Weekends (of LA)! Stand-Up Comedy instructor! Seen at Comedy Connection Mgt., Comedy Factory and North Shore Comedy Productions comedy clubs! Public Speaker! Opened for “Larry the Cable Guy”! Celebrity Impressionist! Songwriter!
December 26, 2007
Good morning! Merry Christmas to all! It was magical for my girls...as it should be. They were so excited and had an absolute blast. Everytime Abby opened something, she immediately gave part of it to her sister...she has always done that; she just instinctively thinks about Caroline. And whenever Caroline opened something, she exclaimed, "Just what I always wanted!!". It was so cute. She would use words like, "wonderful, cool, & neat"..and when those didn't cut it, she'd make up her own words like, "wonderific!"...that explains it perfectly....we had a "WONDERIFIC!" Christmas. A time for family and friends and love and joy...after all of the hustle and bustle, it's just a nice time to visit with everyone.
December 20, 2007
I spoke a little too soon...I just don't know what to expect anymore. She got up again last night, this time, wailing in pain, "Owwy, owwy owwy..."my feet hurt, my knees hurt". I tried rubbing them, hugging her, giving her medicine; she didn't want any of it...it just had to run it's course and eventually she fell asleep. We've got a PT eval booked and some #s to pursue the psych component of all of this. It just has to stop, poor thing...she feels so badly about it and I just don't know how to help her. We talk about it during the day and sometimes she doesn't even remember it, sometimes she apologizes, and sometimes she says that she hurts during the day too but that it's worse at night. Anyway, I'm tired of talking about it, writing about it, and thinking about it so I'm going to take a break from it for a while and just follow our plan. I'll let you know when we establish some consistent progress. For now, we'll move on and focus on the good things. It just has to be that way. So go PATS!!!
December 19, 2007
Hallelujah!!! Her first night with ibuprofen and she didn't wake up once...either it's a coincidence or she had some pain that needed management! Today, was our first official school performance...I have done it many times as an auntie and a big sister but NEVER as a parent...it was just adorable! It was a gingerbread themed singing with props (you get the idea) show. It only lasted abour a half hour, which was perfect for Michael and Caroline (and us)...just enough to see all of their hard work (teachers too!!!)...I am feeling the parenthesis tonight! (It's better than air quotes :)....We were invited back to the classroom for a snack and the classroom teachers surprised us with a little fundraising event that they are doing with abbysangels bracelets...they are such a beautiful blue/purple swirl (Abby and Caroline's favorite colors, respectively)...I had to hold back the tears...if I haven't said it enough, there has been nothing but warmth coming from that school; I can't believe we were going to move towns. See, everything happens for a reason but I am NOT taking responsibility for the real estate crash.
I feel so different this Christmas and in such a good way. I am so happy to see Abby doing so well and enjoying school and it just has a greater meaning; it's all just a little more special. I also feel happier and when I encounter the "grumps" out there, I try to give them a smile or make some happy small talk (I know it sounds corny) but why even attempt to participate in any holiday activity if it doesn't make you happy. It's crazy running around but if it doesn't even have an ounce of fun, then it's time to pack it up. "Tis the season......"
December 18, 2007
It's getting a little better...last night, Abby was about to go into a full blown tantrum (her legs were arching and she began to cry) but she got out of it after only about 10 minutes and she calmly said to me, "Mom, I'm crying because my feet hurt"..."I want the pain medicine". I was able to rub her feet and put the heating pad on it and the whole episode only last about a half hour...HUGE Progress!!! We've been talking about it a lot and she receive TONS of praise and she was so proud of herself. I discussed these issues with the team at UMass today and we are just going to address everything...she could be having joint pain from the steroids and vincristine; she could be having tendinitis from the weight gain; osteoarthritis type pain, or it could be psycho-somatic, or a combinations. I am guessing the latter...so we are going to have a physical therapy evaluation, meet with some sort of counselor or psychologist/psychiatrist, and follow-up at clinic after trying Ibuprofen....she wasn't able to take it when her platelets were low because it can stun platelets but it's okay for her to try now. Plain tylenol probably wouldn't touch the pain. So we have a plan, and you know how I am when I have a plan!!! So we'll see how it goes......
I am (of course at the last minute) trying to complete my CEUs (Continuing Education Requirements) to renew my licenses. These are due every 2 years for the state and every 3 years for ASHA (our national governing body that provides our certification). So, I will soon depart to read 300 compelling pages of research articles on Childhood Voice Disorders and than taking a little quiz. I was asking for brain activities and so there my prayers were answered! I had forgotten all about these pesky CEUs. So now, I'll avoid and just write and write...Abby has her first school performance tomorrow and I could just cry already! Those 5 & 6 year olds are just adorable. I tested a 5 year old girl recently and she proceeded to tell me, "Alexis's name is Alexis" and "Dominick's name is Dominick". Sooo cute! Okay, I'll stop procrastinating....Childhood voice disorders here I come!! And I was considering going back to school for nursing???? @*&% What was I thinking????
December 17, 2007
She finally did it!!! Last night was only 2 of the last 14 where she didn't get up crying. It was about midnight and I was feeding the baby and she came in and quietly handed me her heating pad to be reheated and asked me for some water. No crying, whining, night terrors, tantrums...I praised her up and down and continued doing so this morning. Let's pray that pattern continues...now if we could just get this baby sleeping!!! I don't believe any of you mothers our there who say their babies slept through the night at 3 weeks!! I really just don't believe it!
What a difference, though, I was already in a much better mood this morning. Abby will be resuming her Daisy troop meetings this afternoon so we are on the road to regular scheduling...until the steroids return....2 more weeks; VERY lucky to have the break for Christmas.
December 15, 2007
Well, she continues to get up every night and I just really don't know what to do about it. She cries quite a bit and nothing seems to help. She is losing her voice and I thought for sure we'd be at the ER last night because she was completely aphonic and I had visions of difficulty breathing. That's the thing with her, you never know if it's something serious or not and you just have to take everything seriously. One thing for sure, we cannot continue like this..it is disrupting everyone's sleep and well being. I don't know how Abby functions at school. I myself am looking into some brain sharpening activities because I just feel so dimwitted. I am trying to get ourselves organized so I can start back up a bit at work in January and I just don't know how it's going to happen. I am going to call the nurse practitioner on Monday and have a pow wow about the whole thing.
On the good side (because every gray cloud has a silver lining), our days are quite good and my girls continue to play. They are so excited about Christmas and they love the decorations and lights. My little baby just started sitting up and he looks so proud! What a little cutie he is; he just makes me smile. I love getting the picture cards in the mail and seeing how everyone has changed through the year. It's always amazing when you see the parent in the child and just how cool the life cycle really is.
Tomorrow is the Jets, the PATS are really going to do it and I am going to win super bowl tickets. I already entered and just know we'll win. Okay, that's about all of the positive I've got right now...I'll go find some more :)
December 12, 2007
Well, she slept through the night once and I thought we were on to something but she has woken up during the past 2 nights for about 2 hours. It's been more emotionally draining than anything because I am struggling with being sensitive to her needs and being just plain aggravated. Then I feel guilty for feeling aggravated and the cycle continues....then the reality of it sets in...she has cancer and if she wants 26 heating pads stuck on her head and heated up 3 million times a night, then she should have it! If she wants to cry all night, how can I blame her? She's been so good with everything that has happened; how can I get upset with her waking up at night? It just gets sooo frustrating when there is nothing I can do to help her and she just needs to cry. She really is such a good little girl and so it is hard to see her so upset. Yesterday, we traded Michael for Meghan for a few hours and decided to head out to Bright nights at forest park in Springfield. When John went to print up the directions we realized that this was 1 of 2 days that they were closed during the holiday season. I could have cried but instead I got online and found something else festive for us to do so we went to Edaville Railroad in Carver. It took about an hour and a half but it was worth it. It was the perfect thing for their age group and just the right size. They got to go on some rides and see Santa. The train ride was adorable with tons of lights. When we got in the car to go home, Caroline said to me, "That was wonderful..you're the best mom ever!". That moment was enough to make up for the long ride. Abby liked the fast ride (the tilt-a-whirl) and Meghan liked the same. So despite our exhaustion and the emotional roller coaster we've been riding, we were able to have a wonderful family evening...much needed! I have always enjoyed the holiday season...the music, the decorations, the family time....I want my children to have the same. It's hard to do when everything is so commercial and hectic...it's nice to step away from that part of it and just get together and sing a few songs and see a few lights, even if you have to drive to Carver to do it. Abby has been to school everyday this week and today was her Gingerbread house activity at school. It was great to see her in school with all of the other kids.
December 8, 2007
I am so discouraged..."Maintenance" really should be called "More of the same only longer". Abby felt really sick this week and only made it through 1 full day of school. And that was the day John was home so I decided to go Christmas shopping. Big mistake! She held it in all day at school so she cried all night and was upset that I wasn't home when she got home. She attempted to go on Wed. but I was called to the school a couple of times (Abby wanted the "headache" medicine) and then decided to come home, she missed Thursday altogether, and Friday she made it until 2 but I was called in because her cheek felt sore and wanted her "swish". All week, she was up frequently through the night, not night terrors this time, but a constant droning whine of "I just don't feel good, I just don't feel good".....needless to say, it's been tough. I know I sound "complainy" and I should only look at the daily picture, but all I could think about was doing this for another 17 months (or more) and it just made me feel discouraged. It's one thing for her to miss a few weeks of school at the beginning of Kindergarten but it's an entirely different thing to miss a week a month for the next 2 years; same thing with me at work. I just can't call in the first week of every month to be with her. I know it will probably get better but I just thought it would be miraculously different by the time we got this far. She continues to just be an amazing little girl; she now knows what letters stand for which day on her pill organizer and she is familiar with the ones she needs to take on a full stomach and the ones she needs to take on an empty stomach. She feels soooo bad for waking up at night and I am trying to not talk about it at all in her presence because the last thing I want is for her to feel bad about anything. On a better note, I did some Christmas shopping and visited the Disney store (Thank you again and again Sharon & Jack Palinsky). Audra's parents (of course---where else would she get it from) put away a little fund for me to shop for the girls this Christmas so I wouldn't have to worry too much about it. I honestly had a "magical" time in that store...I know it's sooo commercial and overdone but I had so much fun picturing Caroline's eyes lighting up, as they do whenever she sees anything Cinderella. And to think of Abby's expression being happy instead of grouchy....it's going to be a wonderful holiday season and already has been. Meghan came over yesterday and we made gingerbread cookies...the girls sang and danced to Christmas music and had a great time. I am so thankful to have my niece born around the same time as my girls...they are like 3 sisters and I get to know Meghan and spend time with her in a different way than I would have if she weren't always playing with Caroline and Abby. Her enthusiasm for just about everything is contagious...she's a lot like her father in that way. So despite a tough week, there are so many good things in life that overshadow the bad; sometimes it just takes an extra push to view those things first.
December 5, 2007
I thought Maintenance would be sooo easy and if we could just get here, it would all be fine. Abby just doesn't feel good and she is so cranky and crying and waking up at night. It is really hard when she's on the steroids. She now has 3 different heating pads that she MUST sleep with, in addition to her blanket. She likes her securities and they make her feel safe. She made it through the whole day yesterday but today I had to bring her in some Tylenol #3 because she had a headache and didn't want to leave school. But after I brought the medicine to her, the school nurse call about 20 minutes later and Abby wanted to come home. I was on an errand 20 minutes away (that's how far I got from the school) so Big Grandpa picked her up for me. She was fine with that but once she got to their house, she "lost it" and wanted me. I got there as quickly as I could and took her home. Auntie Kerry and Meghan stopped by and the girls played wonderfully. It was like nothing had ever felt wrong with Abby today. Then after supper, it started up again....she just doesn't feel good and she wants me. Mimi and Boppa are taking the baby so I can get up with Abby tonight. They have been pretty amazing with their help. And how special for Michael that he'll get such time to bond with his grandparents. I've got to run, Abby's calling and I need to go snuggle with her. 2 more days and probably 1 or 2 more to lose the effect. I'll just have to learn to have fantastic fun for 3 weeks every month, knowing that 1 week will be spent by Abby's side. Good thing I like her :)
December 4, 2007
Well, I've been getting the heat for my slacking here....I just took a break from it all for a while. Abby finished up her medicines for "Phase 3" and had 2 weeks without any medicine except her Bactrim. The whole thing was bittersweet. We were soooo happy to be through with her hardest phase but then I realized that we still had at least 18 months to go. I thought I'd feel so good about Maintenance but it really doesn't matter how hard the phase is, it is still constant daily medicine and worrying about every little ache and pain. It is still constant and intense and I thought I'd feel less of that when this phase ended. The best analogy I could come up with to explain my feelings was when you had a huge paper in college. You finished all of the research and outlines but then realized you actually had to write 25 pages after the hard work was done. Or when you're pregnant and get through the first trimester...the hard part is over but now you have to deliver the baby and raise it...you get the idea..I was just surprised that I felt this way. I guess we were just holding on to getting through the first 6-9 months that the longevity of it all really didn't hit.
Aside from all of that...some amazingness to report! The day before Thanksgiving we heard some loud noises out in our yard. Imagine our surprise when we saw a huge landscaping crew with giant leaf blower machines cleaning our yard! John went out to talk to them and all they said was that Abby's Angels were taking care of it. Can you believe that someone or someones out there did something so incredible for us and didn't want or need any credit or acknowledgement???? That just blows me away....we still have no idea who was responsible but I wrote down the company name and will be calling them to try to find out. Now anyone who knows us, knows that we get to our yard last (in the list of priorities) if at all. Our house is old and needed a lot of cosmetic work on the inside when we moved in 7 years ago...so we never really got to the outside and we ALWAYS have leaves. John could rake the entire yard and 2 minutes later it would look like he was never even there. Anyway, our best guess is that maybe the folks on our street were tired of us bringing down their property value :) If you are reading this and are responsible or know who is, please please let us know so we can thank you....such an UNBELIEVABLE act of kindness, you have no idea how that made us feel.
Speaking of kindness, that Thurston family is just amazing! On behalf of the Lunenburg Lions club, they delivered groceries and a turkey for us to celebrate the holiday. It just goes on and on....I am amazed (do I use "amazed" a lot???)..there's no other word in the thesaurus that captures it quite like "AMAZING" (I checked)...so again, I am AMAZED at how wonderfully kind and generous that people are and I will forever be changed by these acts. I will do my best to raise my kids to live their lives this way, thinking of others, and helping those who might just need an extra lift, no matter how big or small their problems may be. So THANK YOU!
Abby went back to clinic yesterday to start Phase 4 "Maintenance". It went smoothly; her spinal intrathecal went well, they always say how wonderful Abby tolerates the procedure and that "they aren't all like this" when they talk to the residents or students watching the procedure. She received spinal Methotrexate and Vincristine through her port. She also received oral Methotrexate and Mercaptopurine. And I am sorry to report, she had 5 of those nasty little blue pills (the Decodron steroid). She was miserable last night with lots of crying and waking up hungry. It doesn't matter the dose or the phase, the steroids will always SUCK and take the life out of me when she's on them. It's a fact and probably the only part of all of this that I really can't cope with. So I am counting down. After Friday, 17 more weeks (1 per month) to go with the steroids. I think we'll have a "No more little blue pill" themed party!
I am still trying to understand how the PATS came out on top last night!! C'mon, you walked a way from the tv a few times in disgust, thinking this was it..the hopes of a perfect season destroyed! Have faith, I just have this feeling.....
November 17, 2007
It's been a busy week! In a good way, though...Abby went back to clinic on Thursday to receive her platelets. It was a great day, even though we spent it in the hospital. She was feeling well and we got to spend some good quality time together. I was also able to bead a little bit, which has become my new form of therapy...I just love creating different little pieces of jewelry! Thanks Audra for making me take a class, you know how I get when I get into something like this! It's fun and we are now trying to make it into some sort of business opportunity. We'll see how it goes.
I was also able to sneak out to Auntie Kerry's Thursday evening for a little party and had a great time! I finally go to talk with some of the wonderful people who have been so supportive of Abby and our familly. It was fun and nice to have some much needed "girl time". No offense, guys, I also need my "guy time"...isn't that what football is for?? I've always been a tomboy at heart :)
So next on the agenda is hopefully another Bruce Springsteen concert..that just can't happen enough...oh but enough about me...let's talk about Abby! She will be done, I repeat DONE, did I say DONE??? with Phase 3 on Sunday!!!!! This was the dreaded phase and even with a few problems, it wasn't that bad...of course, that's what I say now because I've already forgotten about those little blue pills...NOT!! (Remember how funny it was when we all used to say that back in high school?? Thank you Wayne and Garth). Anyway, I believe we are over the hump but there is still quite a bit to go...in fact, we still have 21 more months of treatment if all starts and continues smoothly. She'll continue to get a monthly dose of Vincristine, a daily dose of Mercaptopurine, a weekly dose of oral Methotrexate, a 12-week spinal of Methotrexate, and 5 days/month of the steroids. It's pretty sound that all of that is "Maintenance", which is mild in comparison. And we are soooo happy about it. Who would have thought that I'd be soooo happy to have my daughter "only" on that??? It has just become that routine for us. Then there will always be the waiting game...it makes me wonder how we are supposed to live. Do we think that this may possibly come back and just "live it up??" I mean, we can't be ridiculous and sell our house and quit our jobs and buy a Winnebego...but I do think it will change the way we view things. We still need to live our "regular" lives but with a "stop and smell the roses" attitude. Boy, I am loving quotation marks today!! It's all about the punctuation...remember when Elaine had her issue on Seinfeld with the exclamation point? I can totally relate to that.
Clinic again on Monday for more platelets and more beading.....GO PATS!!!!
November 13, 2007
Abby started vomitting last evening; most likely because of the Ara-C; she had the same reaction the last time. We are never sure whether or not it's the chemotherapy making her sick or if she has some sort of virus. She didn't have a fever and no other symptoms so it's probably the chemotherapy. She did well overnight and we gave her the Zofran to off-set some of the nausea; she seems fine today. I kept her home from school because her neutrophils are low (200; under 100 with a fever is considered neutropenic and anything under 500 is at risk). She will need to go back to clinic on Thursday to get some platelets and probably again on Monday to receive more.
November 12, 2007
The last 2 days of Abby's IV tx have gone well, thanks to Audra. The visiting nurse trained her and she took care of it for the past 2 days. Abby seemed less threatened by Audra (I don't know why because the visiting nurse has been wonderful with Abby) but for whatever reason, she associates the nurse with pain and discomfort. The nurse had to come last night, though, to de-access the port and again, I had to hold Abby down...it was just awful and it's so hard to see her responding this way. The whole thing was less painful for everyone involved when Abby just tolerated everything so well. I can't blame her at all; she's been AMAZING...it's just that when everything goes smoothly, I'm able to forget for a while what is really going on. When Abby is crying and screaming, I am reminded vividly of all that this little girl is going through. This morning, John was getting her ready to go to clinic and she had an absolute fit...she even bit him! This is not like her at all; she usually loves going to clinic but she is worried about her port being re-accessed and is afraid it will hurt. I just hope that she realizes soon that the EMLA will help and she'll go back to tolerating everything like she did before. See, if you work in healthcare, please remember that one little scary thing can set a child back months! It may be easier for you in that moment to something one way but it makes everything so much harder in the long run.
November 8, 2007
Things have gone okay since Abby's been home. She went to school today and has been playing nicely with Meghan and her sister. Her mood has been good and the "meanness" of the steroids is all gone!!! The hard part has really been the visiting nurse. Abby had such a bad experience in the hospital that now she is terrified when the nurse comes near her. She was always sooo good for her medical treatment and now she's scared and it's just awful to see this regression. I had to hold her down as she screamed and cried and said over and over again, "no, no, no". So that part of this really blows right now but there are so many other great things going on. She is soooo happy to be back at school....she immediately came home today and sat at the table, excited to do some of the work that she had missed. She has been "reading" to her sister at night (it's really quite adorable). She has slept in her own bed through the night since she's been home. A lot of the puffiness from the steroids has gone down so she's starting to look more like herself again. She is completely bald again and she felt her head and asked me, "Why don't I feel my hair"..."I thought it was getting fluffy"...I had to tell her that she lost her hair again but she shrugged it off and didn't make a big deal of it.
Today was her last dose (for this week) of the Ara-C and she will continue to have oral Thioguinine daily. She'll get the same chemotherapy drugs next week and then have a little break before maintenance. She'll have the daily IV antibiotics for 9 more days so hopefully that part will get easier as Abby realizes that it doesn't hurt and she doesn't need to be afraid.
November 7, 2007
Abby came home last night...what a crazy few days! She will need IV antibiotics for another 11 days so her port will stay accessed and the visiting nurses will provide services. The good news is that she is halfway through this last hard phase before maintenance. They did a dye study through her port yesterday and everything is placed appropriately so hopefully, there'll be no more problems. She can have her chemotherapy as indicated. She will return to the clinic on Monday and hopefully, there will NEVER be another trip to the ER.
Caroline is feeling better; in her words, "The flu is gone, it flew away".
I can breathe and catch up with myself now!
November 6, 2007
I don't even know where to begin...the only thing good I can say about yesterday is that it's over. I've been as close to how I felt in the beginning as I've ever been and it's so frustrating but it's also good for me to feel the way I need to feel and not bottle it all up. Abby and I slept well together in the hospital Sunday night but starting first thing Monday, it all went downhill. First, I found out that Caroline had been up vomitting all night (she was sleeping at Audra's) and was very sick. Caroline has never been sick and I was feeling extremely guilty about not having been with her. She has been clingy lately anyway and really needing me and for me not to be with her when she needed me most will take a long time for me to get over. I know it sounds a little dramatic but I felt like I was choosing between my kids all day long.
Abby's bacterial blood infection was identified as salmonella (??? I just don't even know where this is coming from...I'm beginning to think that Abby had it first and picked it up during one of her hospital visits)which is very responsive to the antibiotics. This made me feel much better because Abby was scheduled to get another antibiotic which can be ototoxic (we audiologists shudder when we even hear the word). So this lead to consultations by the infectious disease doctors who say that it's usually found in undercooked eggs and chicken. I'll have to have Michael cut back on his chicken intake..it could have been transmitted through Abby's port site but she's never been accessed at home and they are immaculate at clinic...who knows about the ER??? Those ladies were feeling and poking around Abby's port site for quite a while..anyway, it happened and its treatable. So now, the problem became that the nurse (who tried around 4 am)couldn't get blood return from Abby's port and neither could the nurse who tried later in the am. Without the labs, nothing more could happen. Her ANC has to be at a certain level for her to begin her chemotherapy. From here on in, it just became confusing. The phlebotomists came in to try to draw blood on Abby's arm (without EMLA) and I stopped them and told them that she needed EMLA cream but they kept feeling around for a vein and tying the tourniquet. I had to tell them again, "SHE NEEDS EMLA CREAM". What was so difficult to understand about that??? So they left and the IV team came in. They saw that Abby's port was swollen and it hurt her when they tried to put in saline so they didn't want to touch it anymore. A dye test was ordered for Radiology to see if there was any blockages in the port. This all happened around 9/10 am. So, I had to be the one to suggest putting EMLA on another spot to at least get her blood going. Why wait all day to find out about that part? It made no sense to be but the tops of her hands were loaded up with EMLA finally. At this point, I had to go home and see Caroline but I didn't want to leave Abby with everything going on. Audra was wonderful and held Caroline off as long as possible but she wanted her mommy and I don't blame her. So I left for a bit and Auntie Kerry came with Meghan and Kathleen. It was good that they were there because they all played games and Abby got a little break for a while. I basically ran home, hugged Caroline, glanced at my baby, and returned to the hospital. My mom came with me (I just feel better when she's in the room). I went to Radiology with Abby (I transported her myself to save time) and when I started asking about where Abby needed to go, I got some snotty, crab apple transport lady who was bitching all about the nurse upstairs and something about "I don't know where she is or where she's supposed to be"...she wasn't really talking directly to me but was if you know what I mean. I said, "I'm JUST the mom, I DON'T KNOW either, I brought her here to make it easier for everyone else". Her behavior was so unacceptable and Abby overheard the whole thing. Abby pays attention to EVERYTHING and the last thing she needed was to feel tension about her medical care. Anyway, a nice gentleman escorted us to the room and I tried to get the other lady's name but no one seemed to think it was remarkable enough to talk to me about it. I'm still floored that not one person (I told the story to 3 people down there immediately) tried to help me find out the lady's name so I could report her. This is the first time I have ever been in this situation there. I am not some fly off the handle controlling mom by any means; I have let them do their job and trusted them...anyway, I'm rambling now....the radiologist was wonderful and Abby was terrified...she was crying and looking at me to help her and it was just awful (just like it was in the beginning). The minute the radiologist tried to push the saline into her port and view it through flouro, it was obvious what was going on. The needle was below the port and not anywhere close to being in it! So my daughter had a needle sticking in her chest all day (it was now about 2:30). No wonder, she got upset whenever somebody went near her. Well, then the IV nurse was going to try to access her again so we could do the study! I told her that Abby's port was NOT going to be touched right now and that she had been through enough. It was swollen and it hurt and it is the key to all of Abby's treatment and she did not need any more negative association with it. I told her that the needle had been in wrong all day long and she said something like, "her port is tough to access; I did it in the ER and it was leaning on it's side" and "I do these all the time". And she kept calling me "Mom"...NOTHING is more infuriating. Abby's port was clearly straight on the x-ray...she treated me as if I had no clue. I'm not an idiot, as a matter of fact, I work in a radiology dept. in a hospital and am a little familiar with the whole thing. I understand completely some of the communication issues between departments and I understand that mistakes happen. But I also understand that you need to know who your patient is and you need to be sensitive to their needs. You also need to take responsibility when something doesn't happen the way it's supposed to. The reason people go into healthcare is usually because they want to help people so I never understand it when I find attitudes in hospitals towards patients.
Anyway, she walked away and said something to the other staff member like, "Mom is refusing to re-access". I brought Abby back upstairs...all I wanted was for her to have a cold compress for a little bit to have a break and take care of some of the swelling and then we could put EMLA on and try again. I just wanted her to have a break. Apparently no one thought that Abby's situation was urgent because when I got back to the room, there was nobody waiting with a cold compress; in fact, there was nobody at all. Don't you think that if a needle was found in the wrong spot of a pediatric cancer patient's arm (a pt. with a blood bacterial infection in the toughest phase of her treatment) would get a little attention and TLC. I knew it was change of shift and that no one would be back to see us for another hour so I paged them. The nurse who was working with Abby most of the day was pretty good about everything and she got Abby and ice pack. By this time, I had had it! The oncologist came in and she knew just by looking at me. I told her that I would never bring Abby to the ER again and that I only wanted people accessing her port who knew her. (They NEVER have a problem at clinic). I understand all of the stuff that can happen (with weight gain and scar tissue) but there were no excuses for what happened to Abby and I didn't want to hear them. Clearly, the person who accessed her port, didn't do it right, plain and simple. Dr. Usmani (the oncologist) picked up the phone and called the clinic to see if someone who knew Abby would come over and re-access her port. Peter, the pediatric surgery PA came over and was just amazing with Abby. He talked with her and made her feel comfortable...he applied the EMLA cream and waited a full 45 minutes before he even touched her. He got the port in right away and he said that even without blood return you can tell if it's in right. So after all of this, Abby was terrified and now it was time for her spinal tap and chemotherapy. Poor, poor thing. By now, John and Uncle Sean were there and both John and I went into the treatment room with Abby for the intrathecal. She was crying and scared but fell asleep with the sedation and came through it all with flying colors. She did not want me to leave and was crying but I explained to her that Caroline was sick too and she needed a turn with Mommy. She nodded her head and I knew she understood but she still cried for me to stay. Uncle Sean and John were able to distract her and I left to spend some time with my other children. I was deflated and emotionally exhausted. But yesterday is over and today is a new day.
November 4, 2007
The tea was beautiful and amazing...thank you for all of your hard work in making it so special. It was a nice break from a pretty tough week and a dramatic day. As soon as I stepped in the house afterwards, the doctor called and Abby's blood cultures grew, which means that she has some sore of bacterial infection and needed to be brought in immediately. Uncle Sean came and John met us there from work. John stayed until Abby was admitted to the pedi floor and Sean stayed the night so I could come back in the am and spend today and tonight. Depending on what they see, she may have to stay in the hospital for 7 days to get the antibiotics she needs. I don't know how this will effect the rest of her treatment but it's our first major set back and I'm a little scared. I've been doing well but have bottled up a lot of my feelings and worries and am realizing that that's not good either. It will all come out at some point. I have to let my self cry, worry, and think about this all for what it is and not pretend that it's all positive and going okay. I mean, it is okay, but it's also not okay.
We'll find out more this am when after the doctors round.
November 2, 2007
Well, we had our first fever ER jaunt last night...I thought we had beat all of the odds (most kids have already been there with this a few times by this phase in the treatment)..anyway, just as we arrived at Auntie Kerry's to celebrate Ryan's birthday, Abby felt hot so I took her temp and she was 101.7 so we knew what had to bee done. After speaking with the oncologist on-call (and allowing Abby to have some cupcakes), I packed her up and headed down 190. It wasn't so bad, except they didn't have an isolation room available initially, so we were put in a conference room while we waited. It is such a different experience going through the ER vs. clinic...I mean, they were extremely nice, but at clinic, the staff know Abby (and what's she's been like through this whole process) and deal mostly with cancer patients so they're more familiar with everything. Abby is still cranky from the steroids so she whined a bit when they tried to access her port but I had to keep explaining that she is really good and wouldn't move, even if she was crying. It's just a LOT of waiting...we were there for 5 1/2 hours to get labs and IV antibiotics. We were there at least 1 hour and a half before her port was even accessed. It seems to me that there must be a more cost efficient way to do things, but I'm no CEO....I kept asking if they were busy, and I was repeatedly told "no" so I can't imagine what it must be like when they're busy. I sound like I'm complaining quite a bit, which I am, but it was just getting late and I wanted Abby (and myself) to sleep if we weren't going to be admitted.
Anyway, we were sent home around 1...her labs were actually good (she wasn't neutropenic) and it was more risky for her to stay in the hospital than to go home. Her urine and blood were sent out to be cultured to make sure there's not infection. Best guess right now is a virus. So we'll take her Sunday morning for repeat labs and if all goes well, she may still be admitted Sunday night to continue with treatment. I am hoping for this, I do not want this phase prolonged...I just want to do it and move past it.
November 1, 2007
Happy Birthday Ryan!!! 11 years ago today I became an auntie for the very first time. Ryan, you have no idea what an impact that being an auntie had on me. When you were born, I was living in Boston with my friends, with no one to take care of but myself. I watched your mother become a mom for the first time and from that day I learned so much from her and your dad. I learned that there was a love that could not be even imagined until you entered our world. From that moment on, I wanted to come home and visit as much as possible, not wanting to miss a moment of your life. Having you around, made me want to live close to you and be a part of your life. Now, 11 years later, who'd have thought what a handsome, responsible, mature boy you've become. I am so proud of you and who you are and although I've been busy with my own stuff lately, please know how much I love and support you, even when I'm not there. And if your friends are reading this and I'm embarassing you, too bad! There are worse things to be embarassed about. Plus I don't think that I've ever seen you embarassed!
Happy Birthday, baby boy!!
November 1, 2007
She went trick-or-treating!! She felt up to it and she just barely fit into her costume. Caroline was a dynamo! She ran from house to house and Abby did her best to keep up. Thank you Sprague family for having us come along with you! Abby was happy to see Colby.
Abby went to school today and as of 11:30 I haven't been called to get her so I am happy about that...so the worst of the steroids is over; let's hope the second half of this phase passes quickly with little side effects.
October 30, 2007
Abby had a dentist appointment today for a cleaning and I wasn't sure if she'd go through with it but I wanted to try because she has 2 very loose bottom teeth that have her adult teeth growing in behind them. The dentist checked them out about a month ago and said that they would probably come out on their own but if they didn't in a month to go back. Well, poor thing, needed to have both of them pulled after the cleaning. They put gel on her gums to numb them (I told her it was like EMLA cream for the mouth) and she cried because of the taste (and the steroids). The dentist then used these plier type things and just "plunk" pulled them out quickly. She was so brave! The hardest thing about it was that they don't really know her there and when you don't know Abby when she's not like this, it's hard to explain that she's not like this. Everyone nods as if they understand and that it's okay but I want everyone to know my Abby, who doesn't cry and frown. They were fabulous with her and I know that they'll get to meet her again at her next cleaning. There was a little girl in the waiting room who came right up to us and said, "Is that a girl or a boy?"...it was just awful. She didn't mean anything by it but I wanted to slug her and where was her mother??? Abby just looked at me and the worst thing is that she wouldn't talk to Abby, just me..it was as if Abby was invisible except that she was talking about Abby right in front of her. The girl was probably only the same age as Abby and reacted as any little child would but it still made me mad. And then she kept hanging around asking us questions and I was biting my lip to be polite because I knew it wasn't her fault; it's noboby's fault...I'm glad that this little girl has not known anyone sick like Abby. But it made me realize how shielded and protected she's been and how wonderful the kids at school have been.
The good news is that the tooth fairy will be coming tonight.
October 30, 2007
Sometimes you just need to let yourself feel everything...good or bad...and that's just what I allowed myself to do last night. You would think that I'd be so happy right now, knowing that we are almost over the worst. I know that she's going to be fine and that in a few years, this will just be a distant memory..I know I'll cry at her graduation, I'll be mad when she tells her first lie, I'll fight with her when she decides that she's in charge, I know all of these things are going to happen...but right now, it just plain sucks! It was nice to have a break from her the other night but when she came back, I realized just how intense it has been and how much we had just been coasting along, numb to it all. As I was giving her her last steroid pill, she was crying out in pain, "I feel crummy all over" and "My belly is too big"..and honestly, it was just so sad :(
I watch every day as her bus slows down and then passes and then I see her on the sofa, barely even looking like herself...a happy, cooperative, loving little girl, who loves school and people. A little girl who notices absolutely everything around her and keeps everything in her memory. My little girl, my first baby...I just love her so much and I hate seeing her go through all of this. She's been so strong and I have too, but sometimes, I just allow myself to feel it all and now is one of those times. And you know what, I feel a little better already, just letting it out and crying a little bit. It helps.
October 29, 2007
Abby slept at Auntie's last night! I couldn't believe it! She said that she wanted to go and Auntie wanted to take her but we never thought she'd last. I thought for sure, I'd get a call to come get her but it didn't happen. She must really feel loved and comfortable at Auntie's house and that makes me feel so good. Kerry said that she did okay, too. She was pretty upset around bedtime but only got up about every 2 hours and Auntie just slept right with her on the air mattress. I can't imagine (well actually I can) how hard it must have been for you Kerry...thank you for the break! I got to spend some 1:1 time with Caroline, who needs it very badly right now. She really has no clue what it is, but she loves watching the Red Sox with mommy! I told her that this may never happen again in her lifetime so we will always be able to remember back cuddling during the 2007 championship. (It means nothing to her other than she got to sleep in my bed next to her:)
Tonight, Abby takes her last little blue pill for this phase! It is an understatement to say how happy I am about that. Her face is so swollen, you can barely see her eyes...and her mouth has formed into a permanent frown (as Colby says, "I like it when Abby's mouth goes the other way). I just can't wait to see her face and body go back to normal, but most of all her personality....we've seen glimpses coming out but I want her back full-time.
October 27, 2007
It's been a long week for sure but the end (of the steroids) is in sight. Last time, it took about a week for the effects to fully subside but at least we'll know they're going in the opposite direction. That will also mean that we are about halfway through this phase and I think we've faired pretty well. She has not gone to school and hasn't felt well but we expected that and I am thankful that her symptoms weren't worse. She only has 1 more medicine that will be new and that will start when the second half of this phase starts. She had her labs drawn yesterday and everything is okay except her neutrophils which are low (200). This is expected a but I'm sooo glad that she didn't need any platelets. So, aside from the steroids and the Bactrim, she doesn't have anything this week. She'll go for labs again next Thursday or Friday and if all goes well, she'll be admitted on Sunday night to complete the rest of this phase.
I am hoping that she'll want to participate in Halloween; she looks forward to the different holidays all year long and is always asking to look at the calendar.
Boppa will be back this weekend and Mimi is doing well with her eye. So...GO SOX and GO PATS!!! It's a wonderful time to be a fan in New England!
October 24, 2007
There is a saying written on the wall at clinic..
Cancer is so limited.....
*It cannot cripple love,
*It cannot shatter hope,
*It cannot corrode faith,
*It cannot eat away peace,
*It cannot destroy confidence,
*It cannot kill friendship,
*It cannot shut out memories,
*It cannot silence courage,
*It cannot invade the soul,
*It cannot quench the spirit.
I think it says it all...it can do those things if you let it, but if you have the people and the support in life that we have, it doesn't even stand a chance.
October 23, 2007
Abby had a much better night...I gave her the higher dose of the Tylenol with codeine and for a while she just talked incessantly which was actually nice but then she fell asleep and only got up a few times. She seemed to have less episodes of pain as well.
I have to say that one thing that has come out of all of this is my patience in every day activities. Like waiting at the pharmacy or at a traffic light. I just don't seem to have that agitation anymore when you are in a rush and just want to get **** done. I don't get angry when someone cuts me off or honks their horn or doesn't smile in the grocery store. I think, who knows what's going on in their lives? Maybe the women who didn't smile was up all night with a child and is in some sort of daze? Maybe the person honking and cutting you off has a screaming child in the car and just needs to get home. You just never know. I was in the post office the other day mailing some ebay boxes and a man came in behind me with a single envelope. I know what he and the postal worker were thinking...can't you let him go ahead of you?? Now, normally I would but I wanted to tell him...do you have any idea how hard it was for me to get out here with these 3 boxes? And that my daughter is screaming at home because I left to do a simple errand? And to the postal worker...you do in fact work in a post office...people are going to come in with boxes and mail them..it happens. So I try to think about what might be going on for that other person and just smile and move along. You just never know...
Abby got to visit her preschool for a few moments today when we went to pick up Meghan..it was nice to see everyone and Abby was able to say "Hi" and give a few hugs..it was nice to see her interacting like that....so definitely a better day so far! Thanks for all of your prayers and kind thoughts...
October 22, 2007
Today's clinic visit went smoothly, although it took quite a while to get Abby's chemotherapy. Her labs were good; her platelets are starting to come down so she made need some by the end of the week or the beginning of next week. She got the Vincristine and Doxorubicin again with the Zofran to help with nausea and vomiting. I talked to the nurse practioner for a while about some of the issues with Abby this week. She discussed them with the oncologist...the pain is related to both the steroids and the Vincristine but Abby can take a higher dose of the Tylenol with codeine and that might help. They are reluctant to give her anything for sleeping because they are concerned that it may have the opposite effect on her. They thought maybe cutting out the chocolate milk would help a bit because of the caffeine. If things continue to go as they have been, they want to know about it so they can talk to one of their child psychiatrists about other options for medicine. I hate to give her anything else so I'll just suck it up and get through it. I've had lots of help with Caroline and know it's the best for her to be out of the house as much as possible right now but I miss her and am looking forward to having us all in a regular routine again. Unfortunately, I found out today that my mother has a tear in her retina and needs to have laser surgery ASAP so she'll go for that tomorrow. My Dad is away with my brother (I am so happy for them...how many father/sons get to take a vacation together as adults??) They are going to Vegas and Oregon to visit friends and my uncle. Anyway, my mother will need to take some time off from work and will not be able to lift over 5 pounds...that means no Michael fixes for her...She'll be just fine but you have to know my mother to know how it will kill her to stay still. I told her "your body is telling you something"...slow down! And stop giving all of your time to your needy daughter :)
Abby seemed responsive to changing drinks. She liked the purple Gatorade when she was in the hospital so we are going to try that. It's hard because the medicines make the foods all taste different. Her favorites right now are canned peas and instant mashed potatoes...ew!
7 more days of steroids...count down with me please!!
October 21, 2007
Well, there's really no way to sugar coat it...it's tough! The steroids and chemotherapy have taken over...Abby is miserable about 75% of the day...she cries and complains of pain in her belly, her knees, her thighs, and her head. She has some stiffness and difficulty climbing the stairs. Her belly has grown significantly and it gets in the way of her rolling around in bed and bending over. She looks like she gained 10 pounds in just a few days. That's a lot on a 5 year old little body. Just to give you an idea...she got up at 7:30 yesterday morning and by 9:00 she had 2 cups (big ones) of milk, a cup of juice, an omelette, cinnamon toast, and cereal. She looks like some sort of animal when she eats...she even makes grunting noises. It is awful to watch even though I know it's the steroids. Her nights start at about 6:00 when she starts to cry about pain and wanting to go into my bed. She cries out several times, "I just don't feel good"...she doesn't want to be alone up there so I have to go with her. It sounds so easy to just go upstairs and lay with your sick child. The problem is that she never wants me to leave her even for a minute. If I go to feed Michael, she wakes up and calls for me. Caroline doesn't understand and she wants to be with us but she's not ready for bed at 6:00 and she makes a lot of noise and moves around and is just really distracting to Abby. Abby wakes up at least 10 times a night...because she's drinking so much, she gets up to go to the bathroom frequently. She does this on her own, but because of her belly, she has a hard time climbing in and out of the bed and bending to get on and off the toilet. She also cries the whole time. She wakes up to eat and drink and to have the heating pad warmed up...and sometimes she just wakes up to say, "I just don't feel good". The Zofran and Tylenol with codeine don't seem to make a difference.
Now that's all of the bad stuff....there are little "lights" throughout all of this...like Michael has only woken up once in the past 2 nights and he's been as happy as can be. Abby remains fabulous about taking her medicine (she takes up to 9-10 pills at a time sometimes)and she has moments of play and interaction with the people in her life. And the Red Sox won last night and the Patriots are undefeated....People have continued to be wonderfully supportive and helpful. My mom took Caroline last night and that was HUGE...I worry all the time about how all of this is effecting her. She just doesn't understand what's going on. Abby went to Auntie Kerry's for a little while yesterday and I got to spend some time with Caroline. She's such a little nature girl...she picked out leaves outside and painted them. She though each one was so beautiful...she praticed writing her letters like her sister (that's what I used to do with mine) and she's so proud of herself...it's quite adorable to see the expression on her face.
Mimi and John have both cut their work schedules a day a week to help through this time so I can get a break and John and I can divide our time with the kids a little bit. Only 8 more days of the steroids so I will be happy when that part of this is over. She will not have to take them this many days in a row for the rest of her treatment. Well, she's calling me now...she finished her omelette and is ready for her cereal. We WILL remain strong, and this will be behind us before we know it.
October 19, 2007
Abby hasn't gone to school for the past 2 days, but I feel good that she even attempted to go at the beginning of the week. The effects of the Doxorubicin are cumulative, as are the steroids, so we expect her to continue to feel worse and worse. She hasn't had any vomiting but she complains of a headache quite frequently and mutters constantly, "I just don't feel good". She cries quite a bit and barks out orders (not her---the steroids) but it is still a fine line as to discipline. On the one hand, I want her to feel completely comfortable and I tell her if she wants to try to go to school, I'll pick her up any time...on the other hand, I want her to know that school is important and she can't just call to come home to spend time with me...but then I think, "Why can't she??"...she's very sick and wants her mommy. I'm 35 and I still want my mommy when I'm sick. She has been quite mean to John and I can't imagine how this makes him feel...We all know it's the steroids but it is who she is right now so it's hard. Caroline is also going through a mommy attachment thing right now---I can't even imagine what she thinks of all of this....all she hears is that her sister is sick and she watches her take tons of pills and lay in mommy's bed. Although, it did help with her taking her amoxocillan--she swallowed 3 tsps in a row like a champ for 10 days straight---she wanted to be brave like Abby. I give her all the credit in the world--have you ever tasted that stuff???? The baby is doing great---I had him to myself for a little while yesterday and he is just so cute :)
We knew this phase would be tough so we'll just keep plugging away and before we know it, it'll pass.
October 17, 2007
Dear Mrs. Rose Leger, you raised a wonderful daughter!
I cannot express in words (but I'll sure try)how comforting it is to send my daughter to school with the most wonderful, caring people .....Mrs. Mola, Mrs. Zivojinovich, Ms. Jackson...you have made it easier for me to feel okay about sending Abby off....away from me to be with you and all of her caring classmates. With all of the unexpected, unprectability of Abby's treatment and response to it, you have all been nothing but kind and understanding.....in every way possible. I know that Abby has a yearning for learning (clever, I know :) but I also know that she LOVES going to school and you have all been a huge part of that. Thank you for everything, but mostly for loving my daughter and making her feel safe and secure during such a difficult time.
October 16, 2007
Yesterday, Abby went to clinic...she was a little cranky in the morning; I thought she had to be NPO but I was wrong and she cried all morning because of it. I'll never make that mistake again. She did well at clinic and has basically just been my shadow. She wanted to go to school today so I sent her; I doubt she'll make it the whole day but we'll see. Abby's cultures were positive for salmonella, both John and mine were negative. So our best guess is that Michael got it from outside the house someplace and Caroline and Abby got it from him. So everyone is now on antibiotics except for John. I had my tooth problem crop up again this weekend...I have a cracked tooth that needs to come out but I was pregnant the last time and wanted to wait until I could have it done under some sort of anesthesia...it has felt better so I had forgotten about it until I got a HUGE reminder over the weekend. It's all under control now; some pain meds and an antibiotic...I'll make an appointment to have it removed as soon as the infection clears up completely. The pharmacists must just love us :)
Sorry we didn't get to spend any time with you on your birthday Auntie! We'll get to the pickity place soon, I promise.
October 14, 2007
Abby's doing much better...she still has cranky moments but nothing like that first day. She just doesn't feel well but she is so snuggly and just wants to be next to me. It is wonderful in so many ways but also sad. It's hard for Caroline to understand so thankfully, she has a great auntie, who is willing to take her even when she gets up every hour during the night (sooo sorry Kerry). Uncle Sean came home this weekend and took the girls on a wagon ride. It was the longest Abby had been away from me and she tolerated it well. I can't believe 1 week is almost over, it's going by much faster than I thought it would. Tomorrow is another clinic visit with the same medications as last Monday. That's all for now...I'm going to finish watching the Patriots stomp all over the Cowboys :)
October 12, 2007
You know you have great people around you when they are willing to take your crap....literally! Thank you Audra and Dad...you guys are the BOMB! Okay, so you have to understand my sense of humor a bit but the past 2 days have been sent getting samples and delivering them to the lab, if you know what I mean. The doctors are going to treat Abby with antibiotics preventatively because it takes a few days to get the results. So we'll just add more pills to the mix. I spoke with the NP from the oncology team about Abby's rage/tantrum and discussed all of her symtpoms/behavior. The dosing of the steroids is correct (that was my main concern) and that Abby's reaction is probably a combination of the high dose, not feeling well, and any anxiety associated with all that is going on around her. Abby had a good afternoon and night with me yesterday. Caroline went to Auntie's and Abby and I just got to snuggle together all night. Michael's doing much better but still gets up 2-3x night. I was happy to have him last night, though, I missed him so much! Abby went off to clinic this morning with John for her Peg-Asparaginase shots; they will be returning shortly. It's a nice rainy day so I'll just cuddle with Abby on the sofa.
Thanks again Audra and Dad...I promise you won't have to take any more crap from me!
It's a big weekend in sports so if I can just get Abby on board with the ball games, this could work to my advantage.
October 11, 2007
Shortly after I wrote my update last night, I crawled into my bed and snuggled up to my sleeping Abby. She opened her eyes briefly and saw it was me and she just smiled and fell back asleep. Enough said :)
October 10, 2007
Where do I begin??? It started out well, Abby went to clinic yesterday and tolerated everything as usual. She layed quietly listening to Becky's story while having her spinal tap and she made a purse out of duct tape with Jeff. I had a good talk with the oncologist about Abby's night terrors and I was reassured that her pains are not Leukemia (they view her spinal fluid under a microscope whenever she has a tap) and that there would be more of a pattern to her terrors if they were related to a specific medication. So from what we can all gather, the night terrors/tantrums are probably how any anxiety/fears are manifesting themselves in Abby. She just tolerates things so well; it needs to come out somewhere so we just have to get through it. After that reassurance, Abby cried/tantrumed for almost an hour last night before going to sleep...without getting into all of the fabulously interesting details, I hopped back and forth from Abby to Caroline, trying to get Abby to calm down. Her crying caused Caroline to cry and they both wanted me. Finally, Abby fell asleep. She got up a few times during the night but only to ask for a snack or to go to the bathroom. She went to school no problem today and her teacher reported no difficulties or issues. She saved them for me. Abby had a tantrum like I've never seen this afternoon; again without all of the details; she kicked, pinched, threw things, etc for about 40 minutes. She then was crying that her knees hurt, her head hurt, and that she just didn't feel well. She couldn't calm down so I just had to wait the whole thing out. After taking her PM meds, she fell asleep almost instantly. Once she was asleep, I basically cried and drove to my sister's. For that moment, I just wanted to be at someone else's house. I was supposed to meet friends for dinner but didn't feel like going. I didn't feel like talking about it (so I thought, but when don't I??) but after being at my sister's I decided to go....so Thank you Julie and Kourtney for a nice evening...it's always good to vent. While I was with them, Abby woke up again and apparently tried to run out of the house to look for me. She was again having a tantrum/terror and wouldn't let John help her. So I don't know quite what to do...obviously the steroids are a HUGE factor. I remember the last time she was on them, the second day was the worst so hopefully, we are over the hump. I will call the doctors tomorrow to discuss it. It is the hardest thing in the world to not know how to help your child or to even know what's wrong with them. It's hard to know if she's just letting out her anxiety, if it's the medication, or if she's really having pain or discomfort...I just don't know and I feel helpless when it comes to that. As a mother, you just want to scoop up your child and hug them and rock them and make them feel better. I'll keep at it :)
On another note, Caroline has Salmonella now so she has to be treated...but all of Michael's cultures are now negative so he's good to go...literally :)
I will just have to keep focused on the positive things and get through this phase so I can have my daughter back. I am blessed to have the most wonderful people in the world around me..thank you!
October 8, 2007
Well, here it is....Delayed Intensification Eve...doesn't it sound fantastic??? Tomorrow starts Day 1 for Abby...she'll get her labs done first thing and then she'll have her spinal with Methotrexate..she will also get the Vincristine, but she will get a new chemotherapy drug (new to her not the market; well maybe it is new to the market I don't know) Doxorubicin. It is 1 hour IV push through her port. She will also start a 21 day course of decadron, which is the steroid. She has not been on steroids for this long a time period since Induction. Well, whatever the magic combination of medications is, it seems to be doing it's job...the medications along with a whole boat, no ship load of people's prayers and positive thoughts. We will continue to pray and hope for the best. Abby is excited to go to clinic but is sad to miss school; she just loves it! She got to sleep over Meghan's with Auntie and the boys last night and had a great time. It is always hard to get her to leave. My mom and dad took Michael to Maine with them for 3 nights!!! I am looking forward to the sleep but I already miss him so much!! I know it's for the best, who knows how Abby's nights will be. Both Abby and Caroline cried when they realized that their brother was gone for a few days. Boy, for bringing a new baby into the house, these girls just ate him up from day 1...must be that maternal instinct that girls seem to have.
I still feel soooo positive about Abby's treatment but I can't help but be a little nervous. I feel a little like I did way back in April when Abby was first diagnosed and we were able to bring her home for a night, knowing what we would be starting the next day. We felt like we were pretending for one night that nothing was wrong and we could be a happy little family for that moment. When I think back to the beginning I realize how far we've come emotionally and that things are really truly okay. I am constantly amazed at how the support continues in every capacity. Maybe that's why we've done so well. So thank you everyone again and again over and over!!!
Even the Red Sox are doing well :)
October 4, 2007
Abby had her labs updated this week and her ANC went back up! So she was able to resume half dosages of her chemotherapy. It's funny what you become happy about....I never thought I'd be happy that my daughter is able to receive chemotherapy but it means that she is strong enough to continue with treatment...and that means that she will continue to beat this disease and win the war with the "bad guys". Her next phase will begin on Tuesday....she will have some new medications and some of the same...I have the protocol but will find out more specifics when we go to clinic on Tuesday. She and Caroline have been playing nicely...every day when Abby gets off the bus from school, they go in the back yard and play on the tire swing. I admit it, I spy and listen in while Abby tells Caroline all about school. My sister did the same thing, except my sister told me elaborate stories that made my eyes widen with excitement. When I was in Kindergarten in Pepperell (which was held in the basement of St. Joseph's Church at the time)my sister was in 3rd grade at Peter Fitzpatrick...she told me about this amazing playground behind the school. There were different houses shaped like different fruits...the banana house had a slide coming out of the window...and they had REAL phones so you could talk with your friends at recess...the details were astounding and I couldn't wait to go to school there. Well, my sister never told me that she made it up so imagine my dismay when I went out to recess the first day of 1st grade to find no fruit houses...I hope that my girls will share similar sisterly ups and downs and develop the relationship that I now share with my sister...there's nothing quite like it. Who else can you be extremely mean to and fight with for years??? And still be able to laugh and share stories and become close friends??? A sister!
Michael is doing great! A few more days on the antibiotic and another stool culture and he should be good to go...He is now sleeping for 6-7 hours at a time at night!!! I just knew that if we could fix that one little thing with him, that there was such a good baby underneath it all.
Thank you to Mimi and Boppa for all of your help AGAIN!! A couple of nights of a break here and there is invaluable!!
Go RED SOX and Go PATS??? Don't you just love this time of year????
September 27, 2007
Good, no GREAT news!!! Both Caroline and Michael's heart murmurs are innocent...Caroline does not need any follow-up and Michael only needs follow up if it doesn't go away in 8-10 months. Caroline had an EKG today; she was very brave...it doesn't hurt a bit but they loaded her up with electrodes. She was extremely well-behaved and interacted well with the nurses and doctor. Thank you for coming Mimi! It's always helpful to have another set of ears and hands if needed. I also had a long conversation with Dr. Callahan yesterday about Abby's night terrors...she offered a few suggestions and then contacted the nurse practioner at UMass, who will bring it to the team...I feel much better about the whole thing and she hasn't had one in a while...shhhhhhh!!!! The girls played with the Neiman Marcus dress-up clothes today...I'll get some pictures loaded....my 2 little princesses!! Thanks again for all of your thoughts and prayers!!
September 27, 2007
God has a way of sending you just what you need...I was skimming a Reader's Digest at the doctor's office and read a little story about a man who had moved to New York in hopes of attaining success in the media world. Much to his dismay, he found himself in an entry level low paying job and living in a tiny 1 room apartment. He was feeling pretty low when he decided to list all of the things he loved about New York and why he had moved there in the first place..he continued his list as he walked to work..He was happy to see a woman pushing a baby in a stroller, he was happy to see the beautiful buildings, etc, etc. He did ultimately achieve success and throughout the years he used this strategy whenever he wasn't feeling so happy. As I layed in bed last night, I did the same....I am so thankful for so many things...I am happy that we have Michael and were blessed with his presence. I am thankful for my children and family and friends and all of the wonderful people that surround us. I am thankful that we live in a world where there are treatments for Abby and Michael so that they don't have to suffer...we live in a world where my daughters can grow up to be and do whatever they want as women..our culture provides so many freedoms that we take for granted. I brought Abby to her first Daisy meeting and discovered that another child's father was serving overseas. I don't personally know many military families but I went to graduate school with a girl whose husband graduated from West Point and has spent most of their lives overseas. I can't even begin to imagine the selflessness that exists in these men and women who fight for our freedom and sacrifice time with their families. They are truly amazing and I pray for their safety.
I do believe that Abby was "chosen" for a reason. I don't think she just "got" Leukemia. There is a greater reason and maybe it's just as simple as us realizing the above things and to allow us to see the good and beauty in life. Who knows? I haven't figured it out yet and maybe never will but when I get bogged down with life, I need to reflect on all of the wonderful things around me. I also have to realize that it is okay to be sad, angry, disappointed, and scared. And just because I experience those feelings it doesn't mean that I have to get tied down to all of the negativity that surrounds them. It can be as simple as viewing the glass as half full instead of half empty...I know I'm rambling now but I got a good 5 solid hours of sleep last night and in between being up with baby and trying to fall asleep I began to think about all of this.
The baby is doing better, he appears much more comfortable...and Abby is just fine, she hasn't had a night terror in a week...and Caroline is just keeping up! I wonder what Kramer thinks about all of this??? Michael and Caroline have cardiology appointments today so let's pray that everything is okay.
I've been so self-consumed lately...I just need to say a few things....As for the golf tournament, I can't even begin to express how amazed I am by the generosity and kindness that was displayed to us. I am afraid to even mention 1 name because everyone's role, no matter how big or small, means just as much and will never be forgotten. I do have to mention this....during the tournament, a golf cart drove up over the hill towards Abby. A young man got out (Brian McCarthy) and presented Abby with a gorgeous wrapped box from Neiman Marcus. She happily opened it to find a beautiful pink box with dress up clothes and jewelery. And then he drove off into the sunset like a prince. Abby didn't even know him; he just thought she would like it because he knows his daughter would have. Who does things like that??? I am beginning to find that a lot of people do. Like Kelly and John who know my husband from Best Buy...they surprised Abby with a beautiful Melissa and Doug doll house with all of the furniture. The very next morning, Caroline and Abby sat and played with it for hours!! I could go on and on...if I forget to mention someone or something I would feel sooo bad because you need to know that nothing anyone has said to us or done for us has gone unnoticed. From the bottom of our hearts, we thank you; we could not survive this without your support and prayers.
I think I'd better stop or I'll sit here all day!
September 26, 2007
And it just keeps on getting better.....I got some phone calls last night from some of our doctors...the first was regarding Abby; her labs from Monday revealed that she is neutropenic which means that she needs to stop her chemotherapy for this week and be extra extra cautious about germs. She can still go to school but I drove her and will drive her all week so she doesn't have to be exposed to bus germs. I also bought 5 bottles of Germ-X for the class...whose neurotic mother is that???? The next call came from Michael's pediatrician to inform us that he has salmonella...can you believe that??? He has had diarrhea for 3 weeks and has barely slept at night!! The night before I found out, I said aloud so I would remember that I said it in the morning, "There is something wrong with this baby"...Well, I am just so happy to validate those feelings...10 days of antibiotics and he should be fine...time will tell. I am too tired right now to write anymore; I think I'll go watch a show with Caroline and we can both rest a little in this awful heat.
September 24, 2007
Well it's been quite a while since I updated....it's been a tough stretch! The baby continued with his GI issues and therefore, did not sleep very well. A couple of times back and forth to the doctor and he ended up on Neocate, the same prescription formula that both girls ended up with. The battle with the insurance company for coverage will begin as soon as I get up the energy...it is an exhausting thought; I swore after I went through it with Caroline that I would never do it again, who knows, maybe this time it will be so simple...time will tell. Anyway, within 24 hours of being on Neocate, his diarhhea was gone and he slept for 4 and 5 hour stretches!! He still has the reflux pretty badly but it doesn't seem to bother him that much. Abby has continued with frequent night terrors, which entails her arching her feet and back and basically just screaming at the top of her lungs. These last from 15-45 minutes and there is absolutely nothing we have found that helps...I have an appointment this week to talk to the doctor about it. See this is why I haven't updated, I did not want to be whining...I spend so much time trying to teach the kids not to whine; I must lead by example :) On the lighter side of things, Abby continues to do well in school; I attended her open house and volunteered for school picture day....she's doing much better than I ever expected and her lack of hair is a non-issue. The school staff have been phenomenal about keeping Abby comfortable with frequent heat packs for her belly pain.
As for the golf tournament, what can I say???? My dad did an AMAZING job....along with Mike and Steve...your energy, hard-work, and selflessness will NEVER be forgotten....thanks for all of those who participated. Abby had an absolute blast driving around in the golf cart. Someday Abby will know about all of the efforts that went towards helping her family deal with her illness and she will learn about all of the kind people who reached out to her and her family and the scope of it all. It just doesn't seem out of the ordinary to her right now and I am thankful for that.
September 13, 2007
Things are going much better than expected this week with the steroids. The reports from school have all been good; Abby has only gone to the nurse once with a belly ache and she eats quite a few snacks during the day but returns quickly back to the group at school. She has taken the bus all week. She must hold it in all day, though, because she melts down when she gets home. Very briefly and I can't say I blame her. The mother always gets the brunt of it. Sorry Mom (again!)...how many mothers find themselves apologizing to their mothers??? If we only knew as kids what we know now....Childhood wouldn't have been much fun! But those teen years would have been a blast! To have the confidence then that we have now, look out!
I have to tell you that I never proof-read or edit my blogs, I just write. Well, yesterday I re-read the blog from Monday and I feel I must apologize for the expicit descriptions of Michael's GI problems. I work in healthcare and was raised by a nurse. My best friends are also healthcare professionals so we are a little de-sensitized by all the gore and talk about it all quite freely. Anyway, he's still got the D! But he continues to smile and be happy. Yesterday was John's birthday (34, yes he's younger than me!)...Happy Birthday John! We got a fantastic cake from the Dutch kitchen and the girls each got to blow out a candle. Boy the time just flies!!
The new pictures are up; I apologize for the delay; I had some trouble emailing them to Graham and am not computer saavy enough to figure it out so it had to wait until I could talk to John about it and have him do it...and I never scheduled in that conversation :)
The flamingo pics are from the Pepperell Vacation Bible School when they decorated our lawn. The girls are not sticking their tongues out to be fresh (although they do that too); they were catching raindrops on their tongues. The football pics are from the Mayhem game in Tyngsborough, the beach pics are from our Wells, Maine family vacation, and the pics of Abby in the purple dress are from her first day of school.
September 10, 2007
Today was Day 29 and Abby went to the clinic. We brought Mimi and Michael and the day was actually one of the best clinic days so far...it went very smoothly. Abby's port was accessed very easily with immediate blood return. Her labs came back quickly and all of her levels were A-Okay so she was able to have her spinal tap and chemotherapy. She received Methotrexate through her spinal and vincristine through her port. She also gets a dose of Zofran before the Methotrexate...this helps alleviate some of the nausea and vomiting. Abby slept during the spinal and the doctor and nurse told the medical student that she was the best little patient..and that most kids don't tolerate it as well as Abby did today. The clinic was super busy but we never would have known it; we are always treated like superstars there! Abby was soooo excited to see Becky, who surprised her with the most fantastic gift, a Cinderella tv!! It is absolutely gorgeous! It is an LCD (that's the first thing John noticed) 9 inch white tv that is shaped like a pumpkin coach and sits in a wrought iron base shaped like the wheels of the coach. Apparently it was some sort of a gift in the inpatient wing and they needed to unload it and Becky thought of Abby. WOW!!!!! It will come in handy for the next phase...I never thought I'd allow my kids to have a tv in their rooms but it will be perfect when Abby has to stay home from school and is not feeling well; she can be in her own bed.
Abby will still have to have the oral Methotrexte tonight, along with the Mercaptopurine so LOTS of chemotherapy today. She also started the steroids so it will be a long week (it's a 5 day course). Unfortunately, the baby is still sick with diarrhea and bloody stools. He had to go to the doctor after Abby's clinic. The good news is that the doctor thinks that the bleeding is only because of adhesions in his rectum that vaseline should take care of...he may also continue with the diarrhea for another week. He has gained his weight back, though, and is cooing and smiling like crazy..just ADORABLE!!
And Tracy, I had a fantastic time at your wedding; it was just the perfect day for you! Congratulations and here's to many happy, healthy years together!!!
September 6, 2007
Okay, crisis over, at least for now...my poor little baby still has diarrhea but he is smiling and cooing and no more fever!! Abby continues to do well with her treatment, less belly pain over the past few weeks. She is tolerating full days of school with a bus ride. She's had a couple of meltdowns in the evening and at night but I think that's because she is so tired. Boy, can she tantrum, though...no one believes me (except Audra who finally saw one in person)because she is usually very good natured. My mom says that I used to have them and that she and Dad just used to look at each other and wonder what to do. That's kind of what John and I do....I picked up a flyer in the doctor's office yesterday and the first thing I read was "Good news (about tantrums) is that they usually stop by the age of 4"...well she's pushing 5 1/2 so there goes that; I tossed it. Plus, it probably tells you to talk in a nice easy voice and not to yell at them...yeah right! You just have to keep a sense of humor about everything. Abby has clinic on Monday; she'll get a spinal tap and Vincristine, along with the other chemotherapy drugs she's been taking regularly so it will be a long day..I think Gram Gram is coming and we're bringing Michael so that should help...gotta go...it's time to watch the WORLD CHAMPION INDIANAPOLIS COLTS (if you hadn't heard, Payton Manning finally won his superbowl) brag about themselves...
September 4, 2007
Okay, so I hit the panic button a little bit....After we got home from the ER, I did what mothers should NEVER do...I looked up information on the internet....The ER doctor told me that it is routine for infants 6 weeks and under with a fever to have a lumbar puncture to test for bacterial meningitis...a lumbar puncture is the ONLY way to rule it out. He didn't think it was necessary with Michael because he wasn't showing any other symptoms (extreme lethargy-rag doll like). I felt comfortable with this when I left but after I researched online I found that aside from the fever, the symptoms vary considerably. I also found that if not treated immediately, it could result in death, significant developmental delays or mental retardation. Now I was pretty sure he didn't have bacterial meningitis but I also never thought I'd have a child with Leukemia. So I reacted in a way that I had never really reacted with anything(OBVIOUSLY I have some psychological issues resulting from dealing with Abby)...I cried and held him and prayed that he would be okay...I did this over and over again...I thought, what if he does have it and I didn't do anything about it, I was just trusting the local emergency room (they were very good) but how do I know if this doctor had ever seen bacterial meningitis? Maybe he had only even seen a few infants....He seemed quite intelligent and thorough and his explanations were certainly logical but what if??? I was driving myself crazy with the "What if??"....then I pulled myself together and called the pediatrician's office...it took an hour for him to call back! It seemed like an eternity....but after talking with him I found that lumbar punctures are a "dime a dozen" and that if I really wanted peace of mind, Michael could go back to the ER and have it done....(I had visions of rushing him to Boston and trying to find someone to perform a lumbar puncture in the middle of the night and losing precious time)...but the pediatrician reassured me about how rare bacterial meningitis is and that he had NEVER seen or heard of it combined with diarrhea...he also didn't think it was related to the vaccinations because too much time had passed between the shots and the onset of symptoms...probably just a GI bug...I felt much better and decided that I would watch the baby for the next hour and if I still felt uncomfortable I would go and have the lumbar puncture done. By the timetthe hour had passed, Michael had woken up, drank 8 ounces of pedialyte, and was semi-interacting. I was in that poor baby's face, cooing and trying to make him smile...he was so tired but I kept at him..and finally, a MILLION DOLLAR smile!! I stayed up with him until about 4 am just making sure he was okay. John was worried too but not quite as psychotic as me so he took the next shift and by this morning, Michael's fever broke on it's own and he continued to drink. He still has diarrhea but he DEFINITELY does not have bacterial meningitis. So I survived this emotional roller coaster....and know now that I will always worry that much more about my kids because of Abby...things that are usually routine will probably never be routine for me. But I don't need to panic and think the worst...things are going to be okay.
Today is my 8th wedding anniversary so we passed each other in the hallway and said "Goodnight--your turn"...right now it's about the kids. We'll be going to a Patriot's game in a couple of weeks so we'll make that a date night....I just wonder what we'll talk about???? But seriously, I think we're doing well and it has just made us even stronger....being a parent is truly the most selfless thing you can ever do, like it or not. Even after all of this, I still like it!! In fact, I love it!!
September 3, 2007
Whew! What a long day!! Long story short, poor little Michael had a fever and diarrhea and ended up in the emergency room all day. He had blood drawn, an IV, and a catheter; poor little guy! He was soooo good and soooo adorable, trying to smile and talk in the middle of his crying. Still no verdict; either a virus or a reaction to his vaccinations but we have to keep a close eye on him tonight and follow up at the doctor's tomorrow. Although it was a rough day, it was also nice to just hold him all day and snuggle! It seems that there is always someone looking out for us though, because while I was at the hospital with the baby, my girls were enjoying a fantastic beach day with their Uncle Sean. He and Big Grandpa took the girls so they could be with their cousins at Salisbury beach. They had a wonderful time! When Caroline falls asleep in th car, you know she's just had a great day! Thank you Uncle Sean, McCarthy clan, and Big Grandpa for having fun with the girls!
August 31, 2007
Things have continued to move smoothly as Abby progresses through "Interim Maintenance"....she is approximately 2 weeks in with 6 to go! Her color looks good and she is beginning to grow quite a bit of peach fuzz! She started Kindergarten and the life away from the parents...we already are unable to squeeze any information out of her. Those Kindgergarteners are tight lipped...Colby wouldn't break either..."I don't remember", "I don't know", and "I don't want to talk in front of Caroline"...What is soooo secretive about a bus ride, circle time, a few recesses, and meeting some new people??? All I know is that she met another Abby and she put her hat in her cubby. And recess is her favorite. Time will tell...but she can't wait to go back so that's a good sign.
We went to visit Rosie today and saw Charlie and the other kids. It was like we never left. The girls are so comfortable there...Rosie you deserve every bit of your retirement but the world will surely miss the warmth and comfort that you have provided so many children through the years while their parents worked. A home away from home is always how I viewed it.....
Michael went to the doctor today and he gained a hearty 3 pounds!! Can't even count his chins now! What a love!
August 28, 2007
I just put Abby on the bus this morning...she had quite a crowd. It just wouldn't be a first day of school if we didn't have the whole family there. It seems like yesterday that I balled my eyes out as we put Ryan on the bus. Now he'll be 11!! Abby was just a baby then and I never imagined it would be her turn. She got right on and sat down...I was so worried about the other kids' reactions to her without her hair; she was wearing a hat but still looks different than the other girls. I climbed on the bus to tell the driver about Abby (and for another photo opportunity)and I realized that I had nothing to worry about. Those 5 year olds were so scared!! They weren't even going to talk to each other, let alone be able to tease Abby. They were just adorable; their faces barely come up above the seats...she'll be fine. Of course, Audra and I got in the car and drove to the school to see her get off the bus. She didn't see me and just followed the other kids into the building...then I started to cry again! I am really in a good place with the whole Leukemia thing but it's just still hard to see her without hair...I've had great communication with her teacher and the principal so I feel very comfortable...
Abby had a great week before starting school; she's tolerating this phase pretty well now that the steroids are done; they will resume on Day 29...Abby was invited to flip the coin at the NEFL Middlesex Mahem game on Saturday night in Tyngsboro..they were having a fundraiser in her honor. Big Grandpa took her and Ryan and they had a great time. She looked so small next to those big football players! A special thanks to Coach Pare, Pops, and family! Abby loved her Tinkerbell gear and wore her new backpack and lunchbag to school. And she was soooo excited to have her picture in the paper. Also, thanks to Ashraf Soliman of Pizza Pizzaz, James O'Day, and John Sheehan for your kindness. I continue to be amazed every day by the generosity and love that we have received.
August 25, 2007
Abby had her labs drawn yesterday and they were fantastic. Her ANC was well over 2000 and her platelets, hematocrit, and white blood cell counts were also good. The doctor said, "Play, play, play"---a good order to get. Abby has been following orders, playing very nicely with her sister. When they're on, they're on! School starts next week so it's great that she'll be able to start off healthy. She can get into a routine before she has to take steroids again and before she enters the next phase. So she will continue with oral chemotherapy for the next week and she does not need to go back to clinic until Sept. 10th...this is the biggest break we've gotten so we'll take it! Thanks again to everyone who continues to pray for us and support us! It really makes a difference!
August 18, 2007
Whew!! It's been a long week but it's OVER!! I hit the panic button a little bit on Tuesday when the initial effects of the steroids started. It wasn't as bad as it was in the hospital because she had ups as well as downs but boy was she moody!! It is soooo hard to know what is the medicine, what is real pain/discomfort, and what is behavioral....this will be my dilemna throughout this process. So now she is off the steroids for 24 more days but who's counting???? We will spend the next week focusing on getting ready for school....I can't even believe that the summer is almost over.
August 14, 2007
Well, it has been a week since I updated...last week went pretty smoothly and I decided to take the kids on our annual Wells Beach family vacation, despite the fact that John would not be able to attend due to the lovely "tax free" weekend that requires all retail employees to work around the clock...okay vented that one enough!! The girls had an AMAZING time....they loved the water, both the ocean and the pool and Caroline is just a complete fish! The baby was obviously too young to enjoy it but he'll have his turn in the years to come. We've been going to Wells for over 10 years, since before Ryan was born....he said to me, "Auntie Kelley, when I am 20, Michael will be 10 and we'll still be having fun on the beach". It is so nice that they look forward to this weekend so much. It was difficult for me on so many different levels. First, of all, John wasn't there. Secondly, we just haven't been sleeping much due to illness, night terrors, and newborn feedings, and third, I was just feeling so guilty about needing the help that I have needed. I was also upset about Abby starting the next phase of treatment. There are just not enough ways to thank my parents for being who they are. All I can ever tell them is that they have made and will continue to make me and John become better parents by their example. My mother just knows what to say to me and how to help me when I don't even know that I need it. And my father just puts a smile on and makes the best of every situation.
One day when we were walking to the beach, I heard a little boy laugh at Abby and say, "Look there's a boy in a dress!". I knew that he didn't mean anything by it and it didn't seem to bother Abby but it sure bothered me. Her hair loss should be so insignificant but it really is. It was a part of her look and who she is and although she looks great, it is still a big change and adjustment. It is much harder for me than for Abby, which is the good thing. Boppa took the 3 girls on a trolley ride and a woman asked if they were triplets. Abby took off her hat and said, "I'm a girl" very emphatically. I was so happy to hear this and we talk all the time about why she doesn't have hair and that some people may not understand so it's okay to tell them. She is very comfortable talking about her illness and I think that's what made me so sad. It's great on the one hand (for her emotionally) but it is sooo sad to me that she sees her situation as being so normal. As if every child went off to clinic on Mondays and took tons of bills before bedtime. Despite everything negative (I've been venting off a lot lately), it was so wonderful to see Abby on the beach. Three months ago, I couldn't even envision it. Her cousins love her so much and they all enjoy being together. Abby loved the arcade and earning tickets for prizes...Ryan just couldn't wait to show her the ropes.
Yesterday, Abby went to clinic, and as expected, her levels rose and she was able to start the next phase of treatment. I was concerned on Thursday night before we left because Abby's coloring did not look so great so Big Grandpa brought her to the lab (again with a smile on his face)...her levels had gone up then so we were pretty sure it would be a go yesterday. So her new "Day 1" consisted of blood work, Vincristine through her port, 2 doses of Decondron (the steroids), Mercaptapurine (6 MP--chemo), and oral Methatrexate (another chemotherapy med). On top of that, she takes an antacid and does a mouth swish to prevent sores. This phase is called "Interim Maintenance" and is supposed to mimic "Maintenance" which comes after the next phase and continues over the next 2 years. Today we started to see the signs of the steroids....I thought it would be so much milder this time. She's only on them for 5 days and I thought, "Big deal---ONLY 5 days"...but even 30 minutes of her on steroids is more than enough. As I am writing this, Abby has come downstairs 4 times, crying about not feeling well, and I can't seem to find a way to comfort her for any sustainable period of time. During the day, she did have periods of happiness, interaction, and playfullness so I am thankful for that. I will contiue to pray for strength and be happy about the "ups" that we have been fortunate enough to have during this period in our lives. Michael continues to grown and develop and now has the cutest smile you ever saw! 3 more days on steroids........let's just count them down!!
We were lucky to meet another inspiring person while on the beach. It was so nice to meet you, Kerry! Thank you for the blanket and reaching out to our family and to Abby. God bless you and your family for all that you have been through and the strength that you can provide to others.
August 7, 2007
Still feeling sick; had to go back to the doctor and get a different antibiotic, now I have bronchitis too. I do and will stay positive; I mean all I have is a little cold, NOTHING compared to what my daughter has. I am just sooo run down though and feel pretty useless; It just feels like all I am doing is asking for help. Poor, poor, Kelley, what can we do to help her? It makes me sound ungracious but I am just the kind of person who can and does handle things so when I can't I feel like a failure and a weak person. It has just been one thing after another. I am really, really lucky to have the people in my life that I do and I don't want any of you to feel like I don't appreciate you because I do...you are my light, my heart and soul, and the reason there is happiness in the world. I love you all so much and all that you do for me and my family. You make me laugh, you make me cry, and you make me enjoy being me. I am just hitting a little low right now but on the way back up! I am already feeling better this morning, thanks to a different antibiotic and a good night sleep (I hope Michael gave you some sleep Mimi!). Abby's counts were still not high enough yesterday (her ANC was 200; it was 100 last week and needs to be 750 for her to start the next phase) so we continue to be at a stand still. She also has had a few days without any night terrors so she has gotten to sleep well. We will look forward to going to Maine (if the Doctor says it's okay) and getting ready for school. Abby has to go for labs on Friday and back to clinic on Monday so we will wait and see.
August 5, 2007
I have tried very hard to stay positive but I feel like I just keep getting hit...even the little things are getting me down. I though after 24 hours of antibiotics I would feel better but I am still so sick. I took the baby to a bridal shower today (It was just beautiful! and congratulations to my good friend Tracy). Michael was so good there and I felt pretty good myself but by the time I got home I could barely hold my head up and knew that I needed to go to sleep. So my father took the kids to his house AGAIN! I feel soooo needy and I don't like feeling this way. It seems like every day it's something else that poor Kelley needs help with. I used to feel so independent and in control of everything and now I just feel helpless. I am so very lucky to have the support I do but I just wish I didn't need to use it as much as I do. All I can say is thank you but it just makes me feel worse to know that all of your time is consumed with me and my problems. I know I have said it before but I truly have the best family and friends in the world and I hope that someday I can be as good to all of you are you are to me.
August 4, 2007
Well it's usually a pretty smooth week when Abby is "taking a break" from her treatment. We went over the lake for a while yesterday and Abby was a good sport. She agreed to go and was actually happy about it. After about an hour though, she started to get bored and wanted to go. I felt badly for her but I also feel badly for little Caroline, who could spend all day there swimming. She's my nature girl, loves to catch the "creepy crawlys", and just needs to be outdoors. The baby saw the doctor this week and he gained weight well so we are not worried about him! They did find a heart murmur but believe it is an "innocent" one but want the cardiologist to follow-up anyway. Caroline had and still has the same thing so I will be bringing them both in at the end of the month. Speaking of doctors, this week it was my turn...nothing major but enough to make me go to the emergency room...went to Nashoba Friday night; in and out...they were so good there. Just a sinus infection...antibiotics and some sleep (!!!). Already feeling better this morning. Monday is Abbys next clinic day; I'll keep my fingers crossed that we can just move on to the next phase.
July 30, 2007
Clinic was short today as Abby's counts were not high enough for her to begin "Interim Maintenance". Her ANC was only 100 which is extremely low so she has to avoid others who have been ill. Fortunately it is summer and there is not too much going around. She has lost some weight and a lot of her appetite but she's okay. So we were in and out; just got her labs and then we left. We will return next week and we just have to watch for fever or cold symptoms in the meantime.
July 29, 2007
Another great day....First, Auntie Kerry took all 3 children overnight!!! with her own 3!!! I never should have let her but I had a weak moment and it just seemed so easy to let her...luckily, Michael did pretty well, slept his longest stretch yet (almost 4 hours!) but still got up quite a few times. Abby and Caroline also got up for her but went back to sleep without a major production (so Auntie says...). Thank you! Thank you! Thank you! or Mahalo, Mahalo, Mahalo (as Laurie Berkner sings)...see I DID find a new way to say "thank you". So I slept all night long and so did John, which is great for him because he will be working 4 overnighters this week.
We went to Colins birthday party in the morning and Big Grandpas in the afternoon. It was extremely hot but the kids swam and swam. Colins party was so much fun!
Big Grandpa turned 60! today and Auntie Kerry (after having my kids all night) threw together the greatest party! It is amazing how she just gets it all done and looking fantastic. Thank you for taking care of all of that!
Tomorrow is clinic day; hopefully Abby will be able to start the next phase, "Interim Maintenance"...this will also start her 2 years of treatment....meaning, that if all goes well, she will be done after 2 years from the start of this phase..Let's pray for that!
I will be sending Graham some updated photos in the next few days...so keep your eyes opened!!
July 28, 2007
What a wonderful morning!! Just when I was at my wits end, things turn around, even if for just a little while..... Yesterday, while on a return trip visiting a great aunt, Abby developed a nose bleed in the car. Of course, normally this would not be a big deal but when your child has Leukemia, you worry about her platelet count. So off to the ER at UMass we went...Big Grandpa, Abby, and me..Mimi kept the baby and Caroline until John got home from work and relieved her. When I called the doctor, she did not seem too concerned because Abby had just received blood on Monday, but with the way her counts jump around, we needed to be safe. UMass was wonderful, as usual, as Abby was immediately transported to a "clean" room where the air circulation takes the bad air out and cleans the room so it is ultra pure. We did not have to wait in the ER waiting room. Abbys blood was drawn a little differently here so she watched like a hawk, taking it all in; a little confused by the difference but interested just the same. In the ER, they need to place an IV blood line, just in case, so it was a little higher on her arm and she needed a board with gauze to keep the elbow straight. She thought it was soooo cool, she took it home to play doctor and show her sister. We were only there 4 hours (including transportation to and from Lunenburg!!!) Her platelets were good and we just need to see them on Monday at clinic. So after a long day (and few nights) we awoke this morning to find our lawn decorated with pink flamingos!! There were balloons, and cards, and lollipops, and a big bin filled with pool toys!! WOW!! It was like Easter morning...the girls ran around taking all of the goodies off the flamingos. As I write this, they are pretending to swim in our entry way, playing make believe with some of the toys. Thank you soooo much to all of the little kids (and adults) from the Pepperell Vacation Bible school for reaching out to us and making Abby and Carolines morning so special!! God has a way of giving you just what you need right when you need it. Thank you also Auntie Kerry,as always for your unconditional love and support. Your prayers, thoughts, help, friendship, and humor....I learn so much from you!
And Auntie Audra....like a sister to me; was in the driveway when I got home from the hospital with Abby. She had called and emailed the company who makes Abbys blanket and although they do not make her color blanket anymore, they sent some samples of others and Audra ordered Abbys blanket in another color. So Abby had at least 5 blankets to choose from to help replace the one that was lost in the hospital. Last night, Abby did not tantrum and slept through the night....God was listening..
July 26, 2007
Thank you Graham! He has done a wonderful job with this website and now he has programmed it so I can go in and update it myself. I cannot thank you enough for your work on this website.
Not much new to report other than normal mother stuff....Abby has been waking up at night and it has been horrible. Without going into too much detail, she has always been a "tantrummer" (is that a real word?? If not, we will personally have it added to Webster)....she is now waking for various reasons (her head hurts, her knees hurt)...I know I sound insensitive but she reacts the same way for little things so I am left not knowing what is real and what is to be ignored. It is a good time for the Boy who cried wolf book. She does not mean to do it and does not even remember in the morning but when it is happening I am just beside myself. She cannot be comforted when she is like this. We have talked about it at length and she says that she just does not know how to stop. We have tried breathing techniques and using a tissue to dry her eyes but she continues to do it. This then wakes up Caroline who needs to be comforted as well. It is a cycle and by now I am so sleep deprived that John and I have to put a plan in action. What are the first rules of parenthood??? Consistency, consistency, consistency!!! We have not been and need to get on track. OK that is my vent!! I feel much better. Abby will read this as a teen and I will tell her that when she is a grown up, I will creep into her house at night when she is sleeping and throw a tantrum :) Then I will call Caroline and wake her up. The new baby is nothing compared to them. Ooops I said I was done venting but I just had a teeny little bit more....Now done!
We had a nice visit from Jodi, Zoe, Carol, Lauren, Ryan, Audra, Colby, & Colin yesterday....the kids swam and then played so nicely together. Looking forward to more of these moments.
July 24, 2007
Yesterday was a long one! (I feel like I have said that a lot lately). Abby and I arrived at clinic at 11:00 and she had her labs drawn. We had to wait to get them back and found that she needed a unit of red blood so we would have to wait for that. We also found out that her ANC (which was 900 that last time!) was down to 300, which is low so we do not know if she will be able to start her next phase, \"Interim Maintenance\" on Monday. She will have her labs drawn again Monday morning and then we will know. If so, she will only get Vincristine in her port; the other medications will be taken orally at home....I believe one of them is the steroids so we are prepared (as much as can be) for that. The steroids should only be for 5 days at a time so hopefully it will not have as profound of an effect as it did the last time. The nurse practioner told us that she had no idea why we were so upset by the steroids the last time until they got to know Abby off the steroids...she said they all realized just how different she was. Anyway, Abby was able to get her Vincristine yesterday after the labs came back and then we went to the cafeteria for lunch and then to the ENT appointment. I know I say this a lot too but this little girl is amazing. She went from appointment to appointment, from department to department, without complaining. At the ENT, we had to register first, of course, and wait our turn. The ENT was wonderful with Abby but thought that she should have a fiberoptic laryngoscopy. This involved having her nostrils sprayed with a topical anesthetic, followed by two cotton dams (about 2 inches long) shoved up her nostrils. She got a little upset by the taste of the medication as it dripped down the back of her throat. The ENT then put a 1 foot flexible tube up Abbys nose and down her throat so he could view her nasal passages, pharynx, and vocal cords. She tolerated the whole thing without incident. In fact, she curiously w atched the computer screen as the ENT pointed out the various features of her anatomy. The conclusion was \"mucosa\" and we were given a prescription for a nasal spray and an appointment for December to follow up again. PHEEEWW!!! Nothing remarakble found there. So we headed back up to the clinic and waited for Abbys blood to arrive. God bless Judy the nurse....she is so patient and treats Abby so well. She stayed past her shift with Abby so she could get all of her blood. She cut out little stencils for Abby to work on her art project with. The whole thing was done around 5:30 pm. We were both wiped out by the time we got home. But boy I sure missed my baby! Now we just wait for Monday to see what will happen next....just relax, swim, and enjoy summer in the meantime.
July 20, 2007
Yesterday was a tough one...Abby went to clinic with Mimi to get the other 1/2 unit of blood. When they got there, the nurse was a little concerned about Abbys port area because it was a little swollen. They consulted the pediatric surgeon, who called me to ask some questions (Caroline had pinched Abby in that spot a few days earlier and we thought she might have dislodged it...but did not think so after it worked successfully in clinic on Monday). The surgeon decided to send Abby to radiology for a dye test to make sure the port was not leaking because Abby complained of stinging when the nurse administered the saline and heparin. Luckily, everything was fine but it was just a long day of waiting, as I am sure it was for Mimi. John was able to go over there for lunch to give Mimi a little break. Abby was unable to get her blood but she did not end up needing it anyway because her levels had gone up. Her blanket still did not turn up a nd I am just sooo disappointed that I did not follow up on it earlier. Oh well, very little deal in the grand scheme of things. Abby will go back to clinic on Monday for her dose of Vincristine. She will also see the ENT (otolaryngologist) to check out her vocal cords because the Vincristine can cause neuropathy and sometimes the damage can be permanent. The good thing is that if she needs any voice therapy, I know quite a few speech pathologists!! After Monday, she will get a little break; I think it is 2 weeks before the next phase begins. Julie and Kourtney brought over some delicious dinner last night and we had a nice visit. Thanks guys!!
July 16, 2007
Today was a long one for John and Abby. Clinic started around 9:30 and Abby did not get home until after 5 pm. She ended up getting her chemotherapy; vincristine through her port and peg asparaginase shots in her thighs....poor thing had bandaids all over her and 2 huge red circles on her thighs. But she was smiling and had crafts with her; she was very happy to see Becky and she had a good time playing video games with her dad. She needed a unit of platelets and 1/2 a unit of red blood cells so that is what took so long. She will need to go back on Thursday for the other half of red blood cells....not quite sure why it was done that way but did not get a chance to talk to John about it yet; he had to go to work after clinic. The good thing was that I got to spend much needed 1:1 time with Caroline (well 1:1 1/2 time if you count Michael-but he was just sleeping most of the time). She got her hair cut and went to Wal-mart; spent time b ike riding and swimming and even went to the lake.Abbys special blanket was lost when she was in the hospital during her last stay. It got sent out with the laundry and she was supposed to get it back today at clinic. I had forgotten all about it but she reminded me when she got home that she did not get her blanket. She just never forgets anything and now I feel sooooo bad because I should have called the hospital to check on it sooner. Guess what I will be doing first thing in the morning??? Well, maybe the 10th thing....I do have a newborn now and the girls go to preschool at 9...but it will get done! Abby will go to clinic again next Monday for more vincristine....I was mixed up when I looked at her calendar when I wrote the last update...and I thought I had it so together! But she will only get the vincristine which goes in her port so no more spinals for now...and next Monday is the LAST for this phase....then on to the next one. This seems to be my peak \"worry\" period; whenever we move to another phase or protocol so I will just keep my fingers crossed for now........t days she will receive her first course of chemotherapy. Please keep her your thoughts and prayers.
July 12, 2007
Today was just a great day all around! It started off with a visit from Audra, who picked up the girls and delivered them to preschool. She then arrived at my house with Starbucks...any day that starts with a good cup of coffee is a good day! We hung around and chatted like old times....back when we thought it was hard just taking care of one little baby!! Jenn came in the afternoon with Hannah and Faith and the kids swam and played and just had a great time. The perfect summer day.....Yesterday was not as good as our refrigerator broke down and I spent the day throwing food away and cooking all of the meat. I had been pondering when and what diet to start to get rid of the pregnancy and post pregnancy body I have created for myself over the past 5 years and thought maybe cooking all of this meat was a good sign to start on some sort of low carb option...I think I will give a few more days to decide. In any case, "Freddie" from Schiamo s was able to save it! Thank you! It was tough because the babys milk and Abbys chemo have to be kept refrigerated. Never under estimate the luxury of modern appliances!!!
Abby had her last day of the Ara-C (Cytarabine) shots today so I am glad for that....thanks to Mary, the visiting nurse, who has treated Abby (and Caroline) so nicely during her visits. Abby woke up twice during the night last night, crying with knee pain. This scares me a little because this is how she felt the leukemia when she was first diagnosed and had not started any treatment. We have been reassured that this symptom is common with children on the same kind of medicine as Abby so I have to put my faith and trust that this is all it is. The pain did not last and did not require any medication. She will continue with oral chemo therapy until Sunday night and go in for another clinic visit on Monday, when she will receive a Peg Aspariginase shot in the muscle and Vincristine through her port. She may also need a transfusion. After that, she will not have anything (except the Bactrim antibiotic that she gets orally Thursday through Saturday every week) until she starts her next phase of treatment. Wow! We have come so far in such a short time; I never would have believed it! When Abby was first diagnosed, I wanted nothing but to skip ahead 3 years and be done with this whole thing. But now I do not want any day to pass, I want to freeze time in many ways to keep my little ones little. We have adjusted well to the routine of being in this Leukemia club that we never wanted to belong to and I have to say that for the most part, life is life and we are lucky to have such a good one!
July 9, 2007
Summer is here!!! Heat, heat, and more heat!!! Abby has begun to show some symptoms but continues to stay strong and play.....her belly hurts a lot and she was vomiting for most of the afternoon today. She had her labs drawn today at Leominster hospital and her ANC (the one that was in the 300s a couple of weeks ago) is at 1200, which is excellent. Her red blood cell counts are low so she will likely need a transfusion when she goes to clinic on Monday. She will continue to get her cytarabine (Ara-C) four times this week through a shot in her thigh. This one hurts a little bit because the Emla cream doesn't seem to go deep enough. She tolerates it all just fine and usually with a smile on her face.
We went to Makenna's birthday on Saturday; what a little cutie she is!! We cannot thank you enough Maureen and Steve for your kindness....they requested donations for the Abby Laine fund in lieu of birthday presents for their 2-year old daughter...so incredibly thoughtful!! The girls had a fabulous time, jumping in the castle bounce house and playing on the swingset. Steve is so helpful, pushing the girls on the swings. On the way home, I got a flat tire on 495 and had a bit of a meltdown. Usually (it has happened to me many times before-How many times has Mike, John, or Dad received a phone call and needed to come help me out????) I am very calm in these situations but I was alone with my girls and Meghan, and baby Michael....not even 2 weeks postpartum, I was a little hormonal and very scared that we might get hit on the side of the highway. The girls were fantastic and never unbuckled or whined at all! Baby Michael slept through the whole thing! I called 911 for police assistance (I was hoping they would mark my car or put up flares or something) but the police man just told me to back behind the guardrail and then drove off. Luckily, triple AAA was extremely fast and the tow truck driver was sooooo kind and patient! John and Dad made it quickly as well and we were transferred to a safer van to go home. Its always something but we just have to laugh and chalk it up to another little life story!
Tomorrow Abby and Caroline will start a summer mini-preschool program at Mrs. Craffeys. Abby is so excited to show Caroline all of her favorite things. She is such a good big sister and always thoughtful and concerned about Caroline. This will give me a couple of morning hours with Michael....
I would like to mention the sudden and unfortunate passing of Jim Francis, a physical therapist who works with me at Heywood. He was a terrific man, who was so kind and thoughtful when we first found out about Abby. He will have a special place in my heart and my prayers and condolences go out to his family. He will be missed by his friends, patients, and family members. He was such
July 4, 2007
So much to catch up on! I missed writing; it has been so helpful for me to journal at this point in my life and I just know I wouldn’t handwrite something and keep up with it. The 4th of July has always been one of my favorite holidays. I have such fond memories of camping, fireworks, parades, swimming, and ALWAYS watermelon, which coincidentally has been my strongest craving with all 3 of my pregnancies. 2 of my 3 babies were due right around the 4th so it all just seems to fit! This year seemed a little different, in part because of the mid-week spot for the holiday, and in part because of the new baby, and Abby’s illness. But today couldn’t have been better! We started by getting ourselves out for the parade with Auntie Kerry, Big Grandpa, and Ryan, Matt, and Meghan. Such a personal accomplishment to get out of the house in time to see all of the firetrucks. Michael just slept in the baby bjorn and was as good as can be. I have been enjoying him so much. The girls are so happy to have him and if we can just teach Caroline not to touch the baby swing, we will be okay! She just loves her new brother so much and is so curious, she just cannot help it! The day was complete with a visit from Auntie Kerry and Meghan, and Audra and the boys. The girls then went swimming in the pool with Daddy but they did not last that long because it was a little too cold.
I am used to talking and working chronologically so it is hard for me to go backwards but I will start with last Tuesday, the 26th. John and I head out to the hospital with the girls at Rosies (thank you so much Rosie; they had a fantastic time with you! Abby has missed you so much!) for my induction. Auntie Kerry drove in first thing from her 4 day mini-family vacation in Maine. She was there for the birth of her nieces and was not about to miss her nephew. Mimi also spent the day and we all just waited and waited and waited. They kept upping the pitocin and we just kept waiting. Nothing happened! But Kerry got her purse cleaned out, John read a few papers, and Mimi clipped her newspaper articles and made her lists. I watched way too much daytime TV, which is just horrible by the way. So we were sent home and told to come back again on Wednesday.
So we got up on Wednesday and basically did the same thing…John brought the girls to Rosies AGAIN. Auntie was able to spend some time with her kids on the beach before trekking back to Leominster. God bless her and her family….they packed up everything and they all came home, buzzing down the highway, not even stopping for potty breaks (wow Meghan!!)…they lost the last 2 days of their vacation so their mom could be there for me. REMARKABLE!!! Mimi worked overnight at the hospital and came right to us without any sleep. She snoozed for a bit in the chair. Do I have support or what???? And finally, it began to happen. I started having contractions and by noon I was in active labor. I was able to get some pain relief , which never happened with the girls so this time around, things were much easier. Kerry arrived at the perfect time, just able to see me push and deliver her new nephew and my son, Michael John Laine, who arrived at 2:41 pm. He was 7 lbs, 3 oz, and 21 inches long. Daddy and Mimi were so happy! I did not quite believe that it was really a boy so they had to show me and then I was convinced. We had a son and a beautiful baby boy!!! John went to get the girls and they did not quite understand that the baby boy was not still in my belly. Caroline looked at him and muttered to herself, “He is just a little guy”. Abby, of course, was more impressed with my IV and IV pole and asked questions about my medical care. After everyone had gone home, I was left alone with my baby. There is nothing in the world that compares to that first day in the hospital with your new baby. The love is so instant and so strong. It is pure euphoria and it is what I experienced with all 3 of my children. That day could have gone on forever because all seems right in the world and nothing else matters except this beautiful little baby that will always be a part of you.
Meanwhile, Uncle Mike was sent to the emergency room with a scare….he had the symptoms of bacterial meningitis, and/or possibly some sort of neurological problem…..prolonged headache, fatigue, flu-like symptoms. He still has not been completely diagnosed but the conclusion is lyme disease. He was treated accordingly and is doing much better. I mention this because he packed up his family and drove them from Maine to deliver his wife and my sister to the hospital in time for Michael’s birth while feeling so ill. What a great guy! Must be the name!!!
We brought Michael home on Friday after Abby had her labs drawn downstairs. When we got home, we got the results that Abbys ANC had gone up to 1000 (up from 400 on Monday and above the target of 750) so she was going to be able to resume her treatment. The plan was for her to be admitted on Sunday night and spend 2 days in the hospital. This part was hard for me because the new baby cannot go to the hospital and because I am nursing him, he cannot be apart from me for long. So John stayed with her both nights and I started to learn a little more about Michael. Big Grandpa spent a good portion of the day with Abby on Monday and they were able to read books, make beaded necklaces and bracelets, and just chat, which Abby likes to do. No wonder she likes the hospital; it is like summer camp for her. The staff make her feel so special and include her in all of her care. She is now helping to push the chemotherapy through her port and she tells the nurses just how everything should be done. I was able to visit her for a brief period on Monday afternoon, thanks to Mimi and | |
