These are pictures from a wonderful weekend little Devan and mommy Indira and daddy Dermot spent at our house in 2006. Isn't he beautiful?! The combination of a mother who is half Polish, half Indian and a father who is so many things I forget -- but a large dose of Irish and German.
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(see below this post for a post about the Cooper Dupin family weekend... and some memorable Doug Dupin Igloo circa Feb 2007 photos)Indira sadly lost her beloved godfather Joe Ebersole to cancer this week. The Ebersoles live here and are practically like parents of one of my best friends so I'll be attending services for him. He was a HUGE fan of Doug's and the Palisades Museum.
Here's the latest on Devan from Indira's "Caring Bridge" website journal:
MONDAY, OCTOBER 15, 2007 10:55 PM, EDT
Is too much knowledge a bad thing? It can sure drive you crazy. My reporter's instinct is to learn as much as possible about Dev's disease. But knowledge can be scary, particularly when it raises more questions than you knew to ask, and when you have little or no control over the outcome.
In an effort to plan for Dev's two-year "maintenance" treatment in the DC area and prepare ourselves for any possible twists, I've been reading hematology journals on APL. It's a whole new world of "event-free survival rates,” "RAR-alpha reverse transcript," "allogenic vs. autologous marrow transplants,” and “salvage therapy.”
Since Dev has tolerated chemo so well and his docs believe he is responding well, we have all been very optimistic about his beating this and becoming a long-term survivor. What I now understand is that Dev’s latest bone marrow showed him in hematological remission (the leukemia was zapped out of his blood), but not yet in molecular remission (the cancer is still in his cells). That's why they give three rounds of high-dose chemo followed by two years of lower-dose chemo: to kill off and insure those cells never come back.
The more I learn about his disease, the more scared and anxious I feel. In his type of leukemia, patients need to achieve molecular remission by the end of "consolidation"—in his case, after 3 rounds of chemo—and nearly everyone does. Once there, it is essential to stay in molecular remission, and most do.
But patients unfortunate enough to relapse at a molecular level relapse in their blood soon after. So at the first sign of cellular relapse, doctors pull out even-bigger guns than chemo: arsenic, toxic human antibodies, full-body radiation and bone-marrow transplant. All carry staggering risks and often irreversible side-effects. It's terrifying.
Pediatric APL has about 25% incidence of relapse from what I’ve read. Unfortunately, Devan has high-risk APL, because of his higher white blood count at diagnosis. One study said 59% of high-risk children enjoy "event-free survival" 10 years after diagnosis--which made me worry about the other 41%. One of our doctors commented that I could see that as the cup being more than half-full, so why fixate on bad things that will probably and hopefully never happen? Or you could say that statistics don't mean anything to a parent, because if it's your child, it's either 0 or 100.
We have been through the wringer seeing our only child endure two rounds of chemo and pseudotumor and brain surgery and all the complications…And we don’t want to go anywhere near the horror of relapse. Dermot says we need to remain positive and that my worrying about a possibility that we cannot control only distracts us from taking care of Devan. He's probably right. But I can't help wanting all the information so I don't miss anything or fail to do anything that could give Dev the best possible odds.
I wish someone could tell us that he’s going into molecular remission and will stay there forever and that everything will be fine; that in 16 years we’ll be worrying about college and in 30 years we’ll be meeting his life partner. I would do anything, anything for that to be true. I wish he would just be better and that all this worry could melt away.
Instead, I know that the next time he has a bone marrow biopsy, we will be in agony until the lab confirms he has gone into molecular remission. Dermot's not even sure he wants the doctors to do a bone marrow test at the end of chemo round 2, since we would be devastated if Dev were not in cellular remission yet, even though our doctors say the key is to get there by the end of round 3—and stay there. Every time Dev gets another bone marrow biopsy (every 3 months for the next two years, and every 6 months for three more years, and I think annually thereafter), we will have the longest days of our lives till they confirm that he is still in full remission, and we can go back to our lives…That fear is our life now…
Amid all this turmoil in his mother’s heart, Devan continues to be a totally charming little chap, and shows no signs of being ill. It's hard to reconcile his diagnosis with the high-energy, good-humored boy who greeted all his favorite nurses back in hospital and made a beeline for the playroom on his first morning back.
As I write this, I think of Dev's new roommate, a quiet adolescent with sickle-cell anemia, who has not had any visitors all weekend. No parent spent the night at his side. His only company was TV and a stream of nurses waking him up six times last night for his inhaler and shutting off his IV that kept beeping and waking us up. It is heartbreaking to see a kid going through this alone.
Thank you for not leaving us alone. Indira
P.S. Update: Dev’s ANC was over 300 today so they let him out, and we’re back at Adam and Monica’s for another conditional release!
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