Noah’s last day of induction 1 chemo was on Saturday. We know that those meds continue to wreak havoc on his cells (both bad and good), but it’s nice to have those twice a day sessions out of the routine. Since chemo started there’s been a blue cover over the toilet at all times. It gets lifted when Noah uses it and then placed back when flushed. This is to protect the “flusher” from potential splashes of cytotoxic waste. This is all quite the reminder that the drugs put into the body during chemo are absolutely absurd…but it’s what we’ve got. Anyway, that cover was finally removed today.
We’re grading on a curve here, but I’d say Noah’s had a pretty good run of days since the end of the chemo drugs. He’s a scrawny dude and after being admitted at 29.8 kg I’ve seen him as low as 27.1. A few bouts of vomiting have not helped much, but it’s mostly been that he just had no interest in food for about 10 days. That seems to have turned in the last few days though as he started getting the appetite stimulant, Periactin. That coupled with finishing chemo has helped and he was up to 28.6 today. Not quite ready for cage fights, but we’ll take it.
Other than that, I’ve seen a good bit of energy, smiles, humor, and some slight awkward Baldwin dancing to music when he doesn’t know I’m looking. He’s had video calls with friends and family, a lot of little projects, school, art, music, OT, PT, and visits from our doctor we affectionately call “The Tornado”.
I’m not the first person to point out how resilient kids can sometimes be, but it’s really powerful to see it up close. Permit me a bit of self-flagellation but, on more than one occasion in the last seasons of cross country, I noted that Noah seemed to lack some bit of “grit” when it comes to running. In retrospect, that was a hilariously bad take. Setting aside the fact that I was critiquing an 8-10 year old, I’ve seen him endure more in three weeks than I have in 47 years. When I’m feeling like the world is crashing down, he’s turning to me and saying things like “Hey Daddy, we need to load these V-bucks into my Fortnite account now!”, excited about doing music or art, or rizzing up the nurses.
I’d also mention that, while we video called every day when he was in Japan this summer, we were apart for two months. His personality has evolved and is at the point where he’s starting to get some adult-ish type dry humor. I guess it’s probably “Dad jokes” but, whatever it is, I dig it. Anyway, this gets back to cherishing moments, and I’m having a blast hanging out with him. I’m taking him as #1 pick in the panic room draft lottery.
A few other random notes:
Lets talk about “hair”. Noah’s going to lose it; it’s not a matter of if, but when. The doctor said today his hair has held on for a long time. He also said that some patients with ALL do not lose their hair, but all AML patients (that’s Noah) do because of the aggressive in-patient treatment. When that time comes, we’ll shave his head. As will I, and my brothers, and Dad. Let’s be honest; this is not a big deal. If there is one thing a long line of Baldwin men are prepared for, it’s baldness. If anyone else wants to join in maybe you can send a photo of shaving your head to me and I could post here. Open to ideas.
When we started we thought that the 10 days of chemo were part of the 30 days in phase 1. I later thought I was told that the 30 days was in addition to the 10 days of chemo and that’s what I mentioned in the last post. Well, today I got clarification from our doctor that the 10 days were, in fact, part of the 30 days. Thus, we are on day 14 right now. There’s nothing saying that he’ll be out of the hospital on day 30 but, if things go well, that would be the earliest. As mentioned, the key indicators will be how his counts recover. His ANC is zero right now and will need to recover to at least 500. The other is the bone marrow test for blast cell percentage.
We should receive the results of whether Micah is a match for a bone marrow transplant next week. There is only a 1 in 4 chance of that being the case. I’ll mention again (and probably again and again going forward), bone marrow transplant could be a critical factor for Noah; it is certainly already for many other children. He would need a transplant from an Asian/Caucasian donor which is a more difficult match to find. You or your child would not be able to be a match during this cycle, but if the leukemia were to come back in say, 5 years, you would be a potential donor at that time. A second occurrence of leukemia would require a transplant.
As you can see, we’re no longer on CaringBridge due to some aggressive fundraising tactics. The new site should handle most of what is needed already: posting, commenting, email notifications, etc. I built it quite rapidly so apologies in advance if I still need to work out some bugs. I’m sure I’ll add a few more features, but the core pieces are in place. One thing I’d note is that you don’t need a password for the site; simply enter your email and click the link in the verification email to “login”. Signing in provides the ability to be notified by email of new posts.
That’s all for now; love you and over and out!
