Time Article on Childhood Cancer Survivors

Hopefully we will fall into this category in a few years!!!

Anyway, a dad on the LLS Boards just posted the link to this article in Time Magazine. Very interesting article regarding childhood cancer survivors. Lucky for us, CT recently passed a law that mandates neuropsyche testing in all pediatric cancer patients and all insurance companies MUST cover the cost (the tests costs as much as $4,000). Catherine will be tested periodically throughout her schooling as researchers try to understand the late effects of chemo on kids. Hopefully her generation of survivors won't have as many problems because radiation is no longer the standard of care (although very necessary in some cases). Take note of the fact that few pharma companies come up with drugs specifically for kids. All of the medicine Catherine takes today (and I had been told this by our oncs at the outset) are the same exact drugs used since the 50s, but now they are used in different doses and in different combinations for a longer period of time (ie the 26 month for girls or 39 month protocol for boys). Childhood cancer really gets the short end of the stick when it comes to cancer research funding. St. Jude and Curesearch (the group that is run by the Children's Oncology Group who treats 70% of pediatric cancer patients, including Catherine) are the only organizations dedicated to pediatric cancers.

Here's the link:
http://www.time.com/time/magazine/article/0,9171,1645148,00.html

Growing up!!

Thought I'd do a quick update. Catherine had a fun-filled day at 2 doctors' offices. First the weekly trek to Guilford for counts. The office was unusually busy today. They have a lot of new patients which is scary. It's like every kid in CT is affected by cancer. Luckily, Catherine and Alex's new best friend Taylor, a 16 year old volunteer, was there to keep them occupied. The afternoon visit was with the dentist. Catherine loves going to the dentist - I would too if I had healthy teeth like her. Her 2 bottom front teeth are loose. She is so excited!! The dentist told her that if she has an apple everyday they will come out sooner. So, of course, we went out and bought apples. For those of you who know Catherine well, you also know that she is not exactly the healthiest eater. Fruits and veggies are not a part of the pyramid for her. If I had known that all I had to say was your teeth will get loose to get her to eat an apple, I would have done it last year!! Hopefully those teeth stay in long enough that eating an apple everyday will become a habit.
Back to the Guilford visit - Amy, the social worker, and I discussed Kindergarten and what accomodations need to be considered while she is in school a full day. Because she is being treated for cancer, she is protected by a federal law called Section 504. Basically, the school is required to treat her the same as every other child, but must agree to make certain considerations for her, ie. letting her have an unscheduled snack when she is on steroids, letting her miss gym when she has pain related to the chemo, or letting her take naps in the nurse's office if she is tired. More importantly, any absences related to her counts, procedures, doctor's appointments, or hospitalizations cannot be counted against her. Also, if there are extended absences, she is automatically assigned a home bound tutor. Before school starts, the school will receive a letter from Amy and then the principal, teacher, school nurse and school psychologist will meet with me to discuss all this exciting stuff. As usual, I was a little teary going over this stuff, which amuses Amy whose own daughter is considered a leukemia survivor. I just hate that I even have to think about all this. Even when filling out the medical forms for school is a pain. It is just a reminder to me that I do not have 2 healthy children - the one thing you want when you are pregnant. We also started to talk briefly about the neuro-psych testing Catherine will have to undergo when she finishes treatment. The state of CT mandates that all children who undergo chemotherapy have this testing (and insurance must cover it). Basically they want to see what the late effects of the chemo are. The first test, which she will get some time next year, will be her base line. I don't know how often she will be tested, but these tests will tell us what special needs she may develop as a result of chemo, be it physical or neurological. All sorts of fun stuff. I have to say, I am just fried between all that and our move.
Otherwise things are going great. Catherine seems to be a natural swimmer and is doing great with her lessons. And Alex, well what can I say...he just keeps me on my toes. I can't turn my back for a second. I can't tell you how many times I have stuck my hand down the toilet after he flushes it to grab a toy he threw down. Last week he flushed a bag of Pirate Booty down the toilet. And he seems to enjoy eating frozen pancakes out of the freezer. He never ceases to amaze me.

Happy 4th of July!

I am so sorry I have not posted in some time. That is a good thing as it means our lives are somewhat normal - actually busy is more like it. As I mentioned, we have bought a new house and should hopefully close soon. It has been the transaction from hell, but hopefully it will all end soon. We haven't sold this house yet so if anyone knows of someone who wants a charming 3 bedroom home on a great block in a great town, send them our way. Dave and I finally went away for the first time in 2 years and left the kids for the first time since Catherine's diagnosis. Dave had to go to Paris for a business trip and it was hard for me to pass it up. It was only 3 days, but it felt good to get away. The day I had to myself was awesome. I don't think I have been by myself like that in a long time and it felt good (being home to cook and clean or out alone running errands doesn't count). But I was quickly brought back to reality upon my return. I didn't realize that as your kids get older, their lives get so much busier. Catherine has quite the social life, plus she just started a month-long camp called "Under the Sea". It is run by the Darien School System and meets at Darien High School. The actual DHS building is just 2 years old and all I have to say is that I am glad I will never be a freshman there - this building is huge and so overwhelming. Catherine is so funny, when I picked her up, her first comment was that they didn't have a playground. I had to explain to her that this is the type of school where kids like her cousin Julia go to school and they don't get to play outside on playgrounds during school. So far she seems to be enjoying this camp, but it doesn't compare to her swimming lessons. I signed her up for semi-private lessons with her friend Caroline. She absolutely LOVES it. She has only had 2 lessons, but today in the baby pool at our pool club, she was swimming under the water without touching the bottom, and she can hold her head under water for almost 20 seconds! Not bad for someone who was laying around the house last summer getting walloped with chemo.
Speaking of her chemo, all her doses have increased again due to a change in her body surface area (just another way of saying she has grown). Its funny, her ANC had been pretty stable in the 1100-1200 range, and then all of a sudden it started creeping up. I think Dr. Joe wanted to give it one more week, but I asked him to check her methotrexate dose as I felt it may need to go up due to her weight. Of course I should have known that everything would be checked and all her doses went up slightly - including the dreaded steroids. It seems minuscule, but those minor changes seem to make a difference.
On the Alex front, I am happy to report that I have potty-trained him. He starts pre-school in the Fall and the school he will be attending is pretty strict about no diapers. I was pleasantly surprised by how quickly he has picked it up although I am convinced he will end up telling a therapist how his mother was constantly shoving his penis down. I will say that the past month with Alex has been a tough one. He has become very mischievous. He knows how to unlock all the doors and get out of the house... he has locked me out of the house. When he walks out, he climbs into my car and somehow sets off the panic button (which I am sure my neighbors love). Most of all he has become even more strong willed than Catherine - which I never thought possible. He has a definite opinion on what he wants to wear (let's just say I had to hide all his winter clothes) and there are times it takes me 45 minutes just to get him dressed as we battle it out. Very tiring on me, but I always say that some of these characteristics will serve my children well when they are adults (at least I hope).
Finally, I do have some sad news. As you may recall, I had mentioned a teenager from the office who had relapsed during Maintenance and needed a Bone Marrow Transplant. Sadly he relapsed less than 90 days after his transplant. There was nothing left the doctors could do and he went quickly, but according to his Dad he had a horrible, very painful death at the hospital, versus the pain-free death they wanted for him at home. It is this kind of stuff that scares the shit out of me. I hate it when people tell me that leukemia is so curable, blah blah blah. In reality, the 85% statistic for ALL (the type of leukemia Catherine has) is such a joke. Quite frankly, it's either 100% or 0% - either you live or you die. One person described leukemia as a passive/aggressive cancer, meaning, it is an aggressive cancer that just takes over your body, but the leukemia is not what technically kills you -it leaves your body unable to fight infections and oftentimes it is a simple infection that a healthy person can fight that kills you.
I hate ending my posts on a sad note, but I guess it can be thought of as food for thought. We should just be thankful for all that we have and not take for granted each mundane day when everything you have planned out for yourself goes according to plan. So with that, enjoy the 4th and everyday after that and as always, thanks for checking in on us!