We’re now on day 25, 15 days into recovery from the first 10-day induction. This is a waiting game here. The ANC is still zero; we wish it wasn’t. I think the doctors thought it might be going back up by now based on other factors, but they’ve also said it can take time.
He’s been dealing with some temperature spikes in the last few days, with a high of just over 101. That probably doesn’t sound very high, but when you have no immune system any temperature at or above 100.4 is treated with seriousness; blood cultures taken, vitals more closely monitored, and Tylenol to bring the temperature down. He went above that threshold for the first time two nights ago while sleeping beside me and it seemed like nurses were in the room most of the night.
Last night Mayumi slept with Noah and was helping him in the bathroom in the middle of the night. He passed out and, thankfully, Mayumi was there to catch him. We’re now having him count to 20 before getting up and also want him to have someone with him in the bathroom, especially at night when he’s tired and been laying down for a long time.
The doctors have mentioned that sometimes temperatures can be an indication of bone marrow ramping up. This is in addition to monocytes being up mentioned in the last post. The blast percentage has also risen to 8%. I previously mentioned that blast cells are cells either on their way to becoming fully developed or stuck in an abnormal state. You wouldn’t normally want a blast of 8%, but in the case of eliminating all white cells beforehand we hope these are on their way to being non-cancerous cells. I don’t actually know exactly what to think at this point, but we will continue to hope for the best and deal with whatever comes at us.
I believe that regardless of whether the ANC comes up prior to Friday, there will be another attempt at a bone marrow test. This will tell us the percentage of leukemia cells and, I think, a pretty strong gauge of induction 1 results. Those results and the ANC level are the main factors in if Noah will be going home for a few days anytime soon prior to induction 2.
Additional notes:
I clipped Noah’s hair on Tuesday. I think he is still coming to terms with that a bit and wants to wear a stocking cap all the time. Part of the reason is that he’s cold, so it makes a lot of sense. The other part is that it’s a physical difference that will just take some time to get used to. I’ve probably tried to push him to accept he looks good with a shaved head (he really does!), but if the kid wants to wear some hats, so be it. I have a picture in my possession, but not going to post it until he gives the nod. As my brother Luke said, “he’s now a true Baldwin.”
I mentioned Fortnite and Roblox last post and I’ve now joked that Noah has equity in those games via V-Bucks and Robux gift cards. Thank you all so much for the gifts and he’s going to have some wild outfits, weapons, and whatever is in those games.
I’ve tried to get back into working. I work remote which makes it at least somewhat feasible, but I’m definitely not in any sort of routine and my meager brain is both scattered and not in the highest of gears at the moment. I’m thankful for very understanding co-workers and, well, a job with benefits. I work for Starbucks and they laid off 900 employees a week ago and there was great concern a job loss might be stacked onto this situation. I feel bad for those let go as that was on top of 1,100 let go about 6 months ago. At any rate, all I can control is trying to continue providing value and telling you all to purchase Starbucks coffee so I can keep a job. :)
Related to remote work: since we’ve been here the guest wifi situation has not been great. We’re juggling a lot of devices and constantly losing wifi, having to accept terms again, not being able to get back on, etc. I get it; there are a ton of folks jumping on this network and they need a guest system, but it’d be real nice for people staying 50 days to get a darn username and password and some stable Internet. Anyway, shoutout to my friend Eli Miller that got me a fix for this at least in the room so I’m not fighting it all day long.
I first started this post with “A short update tonight” and had to delete it because here we are again with more words than planned but, as always, we love you all and over and out.