Sorry for the cursing, but it’s hard to not given how things are.
This is still a mess in my head, so please forgive me if I’m not making sense. Ava’s latest BMA showed a slight increase in abnormal activity, so we’ve been told to mentally prepare for her getting a bone marrow transplant. They’re concerned because this time, there was an increase in the leukemia sequence. It’s still below zero and not countable, but there’s something abnormal. Thankfully her CAR-T cells are still hanging around, so we get some more time to figure things out. The plan, for now, is to do another BMA in 6 weeks and make a decision based on those results.
They don’t know if the abnormalities are part of her primordial DNA and will always be there, if it’s disease that the car-t is still working on clearing, or if it is a relapse. Since this next Gen sequence is their newest and most sensitive test, they can’t type the cells to see if they’re leukemia or not. Her oncologist said if they were to wait until they could type them, it might be too late, so they would rather make the decision when she’s strongest and best able to handle the bone marrow transplant.
If her car-t cells are still hanging around next when they do her BMA and her BMA shows no increase in activity or even a decrease, they would continue to monitor and wait. If they do the test in 6 weeks and there is an increase in activity, they will do a transplant after the holidays.
I can’t say we’re entirely blindsided, but we’re bummed. In my heart, I’ve always felt CAR-T would be her cure, and it hurts like hell to sit with the knowledge my hope and faith wasn’t right. Over the last 24 hours, I wondered what I did wrong and how come my amazing child has to go through this. Was I not grateful enough? Should we have prayed more? Were we wrong by not going to mass? The second-guessing is killer.
Over the last couple of hours, I’ve come to realize that maybe this is her cure. The doctors told us over and over that CAR-T hasn’t failed her. It may be just what was needed to bridge her to transplant. They said that if she does go to transplant, she’s going on super strong and with a whole lot less chemo than other ALL patients.
Ava is doing well. She handled the news in true Ava style. She listened, didn’t ask any questions, and then came home and made dinner. Today she woke up and went to the dentist for a filling. In true badass fashion, sister got her cavity filled without local or laughing gas. This child never ceases to amaze me.
Of course, I’m still praying that CAR-T has cured her and that the next BMA results will show no change or an improvement so she can avoid transplant; that’s my most desired wish. But I am also praying that God gives her oncology team and us the strength and faith to trust Him, His plan, and His timing. So please lift our amazing fighter and us in prayer. We could use them.