Sorry that I’m way overdue on my Thursday clinic update. I’ve just felt exhausted lately and instead of staying up late reading the news/caring bridge updates/blogs etc and writing something on Scotts page I’ve just been hitting the sack and addling my brain reading some toshy novel.
Anyhow, Scott is doing okay, not great by any stretch of the imagination, but okay. His counts last week were pretty awful but he got his chemo and we struck another week off. He has 2 doses of vincristine (chemo) left to take, 6 of methotrexate (chemo), 10 days of 165mg per day of prednisone and 28 days of 6mp (chemo). In 5 and a half weeks (unless he has any delays) he’ll have a bone marrow biopsy and a spinal tap and if they are clear then hopefully he can start on the path to recovery. Surprisingly I am okay about him going off treatment. Most parents aren’t, and I know that David is nervous; they feel anxious having the safety net of chemo pulled away, but I’m not as pissing-my-knickers scared as I thought I would be. It’s the next 5 and a half weeks and the end of treatment tests that are causing me to be a complete mess. I’ve never found the so called “new normal” (which is the biggest pile of crap phrase ever damn well uttered IMO) during Scott’s diagnosis and treatment. The nurses tease me mercilessly, yet kindly, about my regular meltdowns and how each week I give them the 3rd degree regarding his counts and symptoms. Hell they even know I have to knock back half a bottle of Pepto Bismol, a hot toddy or two and a handful of Xanax just to make it to clinic!! Anyway, what was I rattling on aboot? I’m not sure this is making any sense to non-cancer families or not? What I’m trying to say is I’m even more of a mess than normal but not worried about withdrawing chemo. You see, I’ve been digging deep and reading everything I can since this shit started and there are doctors out there who believe that t-cell leukemia is so aggressive that continuation therapy (the less intensive last year of treatment) is not strong enough to hold back a relapse. So by that reasoning everything Scott has received lately is not protective against a recurrence so stopping chemo is of no consequence. Continuation therapy (called maintenance in pre-b cell leukemia, the most common form of Acute Lymphoblastic Leukemia seen in 85 – 90% of cases) is most definitely beneficial, and maybe it is in t-cell, but it is a little controversial. So this is what I cling to and boy, I can’t wait to see the back of these lifesaving yet cruel and tortuous drugs. And whilst I’m on the subject, I will never ever forget those who have gone before us, the parents and children who bravely became human guinea pigs and forged, for children like Scott a path, and a good chance of long term cure.
Sorry for rattling on and thanks for checking in.