We’re now about 30 days in from the start of induction 1. I’ll cut to the chase; the ANC (neutrophils) is still nearly zero.
Noah looked so good coming into about day 15 that I really thought this number might bounce right back. In retrospect “starting the clock” on that has not been a healthy mindset. Starting the day holding my breath for counts doesn’t really help anyone. Mayumi has been much more patient and strong than I have during this period which has been helpful for us all. As is the way of the world, Moms often get taken for granted, but it’s hard to overstate how much she’s carrying through this all and doing an amazing job at supporting, loving, and keeping us afloat.
Noah’s attitude continues to be upbeat and really impressive. Mayumi and I leave that room multiple times per day and get to come home every other day. To be honest, I probably feel less anxious at the hospital, but I can’t imagine not leaving the room for 30+ days. He did say “I wish I was home” the other day. Us too, bud, us too.
Back to the medical update: In the last post I noted that the bone marrow test was scheduled for Friday (yesterday). That procedure was pushed due to low counts. It has been rescheduled to next Tuesday and, as far as I know, will be done regardless of counts. During that procedure, another LP (lumbar puncture or “spinal tap”) will be performed to again test for leukemia in the central nervous system.
I’ve mentioned ANC (absolute neutrophil count) a number of times and that continues to be important. There is another count, the APC (absolute phagocyte count), that doctors were really tracking prior to doing the bone marrow test. That count is a combination of neutrophils and monocytes and they wanted it to be above 300. Both of these are white blood cell types that you want/need.
White blood cell composition is typically about 90% neutrophils and lymphocytes. Monocytes make up 2 to 8% and then a few other cell types most of the rest.
The much-covered blast cells are the not fully developed and/or abnormal cells (that’s the leukemia). More typical blast cell percentage may be around 2% of cells on the way to being normally functioning blood cells of various types.
I say all this to preface what we think we do and don’t know. Take any medical updates I share with a grain of salt because: 1. things are always evolving and 2. I’m not a doctor. But mostly, I’m not a doctor and I’m sure the medically-inclined have noticed all sorts of misunderstandings in my updates, but I digress.
Noah has some monocytes and a very small amount of neutrophils; I say zero because it’s low enough that it seems to be subject to lab variation day-to-day. As such, I don’t think we can say for sure that neutrophils are definitely going to come back. I’d like to think it’s a matter of “when”, but can’t say that with certainty.
At a high level, leukemia is when “blast cells” replicate uncontrollably and effectively crowd out other white blood cell (immune system), red blood cell (oxygen-carrying), and platelet (clotting) production. An extremely high white blood count might be due to an infection, allergic reaction, disease, etc. because the immune system is kicking into high gear. That high white blood cell count mixed with a very high blast cell percentage almost surely means leukemia. Noah has neither a high white blood cell count nor very high blast percentage at the moment. These numbers jump around, but lets say 8% for blast. We don’t know if those blast cells are on their way to being healthy cell types or stuck in an abnormal state and will start rapidly replicating.
As for red blood cells, the oxygen-carrying protein hemoglobin is the main marker that is watched. Noah has held on to those fairly well. For context, an average count would be around 12. When he was admitted it was at 4.7. With transfusions every 5-7 days, he’s hovered around 8. He dropped to 7.4 the other night and they transfused again. Platelets are often the first to go and the last to come back after treatment and we’ve seen similar here. He’s needed many more transfusions of platelets (average maybe every 3 to 5 days) than blood. The bone marrow needs to be producing these components and that he needed that blood transfusion the other day was not a positive indicator.
These counts neither prove that the leukemia is set to ramp back up nor that induction 1 has knocked out the bad and the good will ramp up. The bone marrow procedure on Tuesday will shed light on all of that. If leukemia is detected, he will stay in that room and induction 2 will start at some point. If leukemia is not detected and counts recover, he will go home for 5-7 days and then back to the hospital for induction 2. It goes without saying that we’d love to have him home for any amount of time, but there is a much bigger picture here. The point is that induction 2 will happen regardless of the results of that test (and further future chemo). Logically, that also tells you that even if leukemia is knocked out of the current cells, there’s nothing saying it would stay that way for long. We’ll deal with whatever comes our way.
A few random notes:
Noah has gotten a ton of art therapy during the time there, but much less music therapy. The music teacher was on a long vacation and then got sick right when she returned so, up until this week, he’d had only one session. This was made up for quickly, as the music teacher had sessions each of Wednesday, Thursday, and Friday. A ukulele was donated to him and he’s enjoying playing that and picking it up fast.
A Pacers player stopped outside the door the other day to talk to Noah. He was dressed as Batman and they quizzed me about who it was. I failed my big chance to show how much ball I know as my mind went blank. Anyway, it was Aaron Nesmith. I should have known; I’m a Celtics fan and he started there before a trade to the Pacers. Great guy.
My buddy, Chris Zelenak, snuck a giant frangipane pie for us into the family room refrigerator. We’d been thinking about a gift for the nurses and the shift change at 7pm was the perfect time to provide a treat to about 10 nurses at once. I FaceTimed Noah and he presented the pie and a “Thank you” to the nurses that have been so kind and effective during his care. We’ll continue to lean on them and try our best to express gratitude for all that they do.
Thanks for reading, we love you all, and over and out.
