I have the best news: Noah is in REMISSION! The doctor called a few minutes ago and asked if I was sitting down. I said something to the effect of “I don’t know; hunched over?”. He hit me with it; the MRD tests came back negative.
We talked for a bit and then I took the phone inside to put Mayumi on speakerphone. She listened as the phone visibly shook in my hand. After the call we interrupted Noah’s current TV obsession, “Dr. Oakley, Yukon Vet”, with a long hug. Noah asked Mayumi “is Daddy crying?” and she said “we both are”. I said “happy tears”. He was kinda all, “cool, can I get back to my show?”. 😂
I jumped in my car after and drove off to the coffee shop here to bang out a quick post. I did take a long route and may have broken a few laws while damaging my ears jamming to Metallica’s “Battery” at 11. Highly recommend!
Now that we’re through the important stuff, let’s get to some other important stuff… It’s not “over”; we’ve got a long road ahead of us. I’ll have more information as we go, but Noah will go back to the hospital on October 28th for the second induction of chemo and that won’t be the last of it. The second round is not exactly the same, but similar to the first.
That we have to go back for additional rounds of treatment should tell you a lot about what remission is and is not. First, it is wonderful and terrific; I can’t express that enough. What it is not is a guarantee. First, the MRD (Measurable Residual Disease) testing is not infallible.
Additionally, remission does not mean “zero” leukemia cells. Remember in the last post I mentioned that MRD testing can detect “up to” one in a million cells depending on various factors. One of those factors is the type of leukemia. The test is actually less sensitive for AML and, as such, it can only detect one in 10k. There is a threshold of “allowed” leukemia cells in order for a patient to be considered in remission. That threshold is below five cells per 10k. Noah did have detected cells, but it was one in 10k and one is better than four. If we really want to permit ourselves some rose-colored glasses for just a bit, it’s also worth noting that we can’t prove that these one in 10k cells are actually leukemia. They “could” be cells that are not fully developed.
This week has really been a trip and is ending in the best way we could have imagined. Just a week ago I laid awake next to Noah during the night while he received a blood transfusion. His immune system was still effectively zero and the lack of red blood cell and platelet production suggested the bone marrow was not going to come around. We also had to push the bone marrow test due to low counts. The doctor expressed today how concerned he was at that time. Things were looking pretty bleak.
From Tuesday forward starting with an uneventful procedure, we’ve had a string of positive (well, medically negative) news. Even so, I prepared a post this morning for the case that things didn’t go this way. For me, this was an exercise in processing what might be. Some do yoga, others meditation; this is how I deal, I guess. One thing I didn’t write in that “alternate” post because I didn’t want to think about it was that the need for a transplant was greatly increased if this first induction would have come back positive. My sense is that, given Micah is a transplant match, we were either well down the road to that, if not immediately skipping to that destination. At any rate, it felt soooo great to delete that alternate post.
As much as all of this has felt like a bad dream, we are now awake, and we are so happy and thankful. We are thankful for all of the support from family and friends, the continued care from the medical team, and Noah’s incredible spirit through this all. Again, we are not done. We still need support and there will still be ups and downs. But we must celebrate the wins and this is a BIG one. We’re over the moon to be able to share it with you. We love you all and over and out.