Whoa---I didn't realize it's been an entire week since my last update. Miraculously, we've made it to count recovery w/out any additional transfusions. Quick clinic visits aren't something we are used to...but we could get that way! Last Thursday's counts were ok---not good, but ok---and by Monday his counts were awesome....good enough to start the next round of chemo, actually. That should've been my first clue that something was amiss. Come to find out, Seth WAS supposed to start chemo on Monday (the 22nd), but he had been incorrectly scheduled to start chemo next Monday (the 29th)---a misscheduling of one week of unnecessary delay. The clinic quickly confirmed and corrected this, as unnecessary delay is to be avoided. Not to mention, Seth has already racked up nearly 120 days of NECESSARY delay. (Unreal, huh? It's unreal to me, too, and I've lived every day of it.) Anyways, they scheduled him to resume chemo today....but, that too has been postponed temporarily as the oncologist are now seeking additional consultation regarding use of Dasatinib in Seth. We would like to switch from Imatinib(Gleevec) to Dasatinib (Sprycel). Gleevec is THE drug that has made all the difference in Ph+ ALL over the past 2 years, bringing chemo patients to survival rates equal to or better than transplant patients. Over the past months, Gary has done much research into the next generations of the TKI's (dasatinib, nilotinib, and a 4th whose name escapes me). Long [complicated, technical] story short: Dasatinib penetrates the CNS (the central nervous system), and Gleevec does not. Relapse tends to happen in Ph+ patients in the CNS. Past (and current) protocol is to use cranial radiation for treatment of the CNS. We are stongly opposed to that treatment for many reasons; the risks are aplenty and the rewards are few, if any---that's a story in and of itself. So, we're thinking toward the future at this point.
Anyways...we thought we had a week to discuss this with the docs, but come to find out (on Monday night) we were supposed to have started chemo that day! Ugh...unfortunate timing of this all. We didn't want to cause either rush or delay, but we're amidst them both. Please pray for guidance for us all at this point of decision-making in Seth's treatment.
Seth has been feeling good and doing well. Food intake is, um, ok---if you consider a Moe's quesadilla every day for 5 consecutive days good?! :-) He's trying, and we're supplementing. His physical activity is sporadic. After a quesadilla, he gets up and boogies, other times require a bit more insistence.
Several of Seth's friends are currently in the hospital. Please pray that their treatments are successful and well-tolerated and these children's counts recover swiftly. We ask that you pray for guidance for all parents as we advocate for our innocent children who are facing such beasts.
---Trina
P.S. The pix is of the kids as they're ready to hit the road for another ride in their new truck. They grin ear-to-ear on long and short rides alike. Seth's become quite the driver and Savvy (aka The Radio Girl) can always find some good tunes! It's too cute.
