Alex had his weekly counts check, and his ANC is actually LOWER than last week - AND he's been off Chemo for a week!?!? His ANC was only 300 - still in the danger zone. I'm really worried that he will get a fever, and wind up back in the hospital.
Alex's counts should be in the 750 - 1500 range while on the maintenance phase of his Chemo regiment. Because his numbers are so low, he is off Chemo completely this week, and the doctors want to re-check his counts next Monday. If they are still low, after two weeks off treatment, they will perform a genetic enzyme test to see if Alex is one of the really rare cases where his body just doesn't metabolize the Mercaptapurine Chemo; essentially allowing it to continuously obliterate his immune system, instead of just regulated blasts once a day.
If Alex *is* a carrier for that gene, then they will have to adjust the protocol. I'm scared of that, since this protocol has an 80 - 90% cure rate.
Right now, that is all we know. We just have to wait and see what his body does this next week. I try not to think about the fact that if he doesn't have this enzyme issue, then his body will have been Chemo free for two weeks - and so has his cancer...
We are torn between keeping him home, where we can control his environment more, and letting him go to school each day where he can be a normal kid, but also allowing him to be potentially exposed to the normally benign cold/flu/stomach bugs that for Alex would put him in the hospital. I am so grateful that Alex's class has been so conscientious about letting me know if a child is sick, and adhering so rigorously to the school sick policy - it sure makes us feel better about our decision to let him go to school!
Tonight, Alex fell asleep at 7:45 - really early for him - especially off treatment. I *really* hope he isn't getting sick...
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My thoughts and prayers are with you and Alex. Our community (even strangers)continually come up to us and say they are praying for Alex and a cure for Cancer. We love you!
ReplyDeleteTake a deep breath and move forward one step at a time. You are an amazing mom, Alex is an amazing kid, and he has the best doctors on the planet. And if love from friends and family alone could cure Cancer, he'd be through this already! I wish I could make his counts go up and make the chemo protocol run smoothly. Hell, as long as I'm wishing things, I'll just wish he never had Cancer to begin with! I can only imagine your feelings of helplessness and frustration...but please always know that you are not alone! We are all here to support all of you as you go through this. And if the current path isn't what takes Alex to being cured, the NEXT path will. I truly believe that. Love you! xo Erin
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