Sunday, November 02, 2014

Information Overload

Way back when we started this whole cancer thing, Adi was what they call a "prednisone-poor responder." When ALL is first diagnosed, children start a regimen of steroids -- prednisone, to be precise. The goal of the steroids are to break up the blasts (the bad cells) and get the number down from whatever astronomically high starting point you're at to under 1000 blasts by Day 8. Our Day 8 results were not great. This put us on the path to High Risk treatment, which was then confirmed by Adi's fairly abysmal Day 15 results.

Those were some good times.

So, anyway, we've been on the High Risk path, which means that treatment is longer and more aggressive. And part of that treatment was supposed to be cranial radiation.

We were never thrilled with the idea of, you know, shooting radiation into Adi's brain. And then we went through all this horrific stuff like seizures and PRES, and there were MRIs of Adi's brain, and they told us there was damage, but they didn't know if the damage was permanent or reversible or what would happen. They just couldn't say. 

Adi was supposed to have his cranial radiation over 8 days during his first interim maintenance period. But because he had emergency surgery and then went on vacation after recovering, his oncologist agreed to push the radiation to the second IM break. And then as we approached that break, another doctor from his team said that maybe we wouldn't do the radiation, but then the first oncologist heard about that and said, WHAT THE SUDDENLY (this is a direct translation of a Hebrew phrase which would be better translated as WHAT THE HELL, but you probably figured that out.), and said OH YES YOU WILL DO CRANIAL RADIATION, but then we did ANOTHER MRI of Adi's brain and GUESS WHAT??? There is STILL damage from the PRES and again a different oncologist said NO RADIATION and this time the first oncologist basically said FINE DO WHATEVER YOU WANT.

It was... a little disconcerting. 

At the same time, another family talked to us, because their daughter has T-Cell ALL AND she had PRES, and terrible neurologic reactions to chemotherapy, and although the doctors originally told them NO RADIATION, now they were suddenly saying YES RADIATION, and it's a little bit disturbing when that happens. 

So they went and talked to the head of the radiation place, who told them NO WAY RADIATION and then they spoke to two other senior oncologists, who BOTH said NO NO NO NO NO RADIATION, and so it looks like neither kid is getting cranial radiation, and it's one of those things where you say, OK, I really hope that by PRESERVING YOUR BRAIN FUNCTION I am not inviting the cancer cells to HAVE A PARTY IN YOUR BRAIN. 


Tomorrow, we start what is supposed to be our last round of chemotherapy. A little Vincristine/Doxo, a little ARA-C, some intrathecals, it's gonna be a blast. It's supposed to take 4 weeks and be outpatient. And I know I'm supposed to be optimistic, but really. We have NEVER done this in 4 weeks as outpatients. So, wish us luck.