Glad to report that Noah completed Round 4 (Intensification 2) and has been back home since Tuesday. Given we’d heard all sorts of time estimates (7 to 10 weeks to much more), out in 36 days was relatively quick. As of now he’s scheduled to be back home for a couple weeks.
His counts are still really low, but it was a nice turnaround from the week before. The last post noted that he spiked a fever of 103 and was put on a couple heavy-hitter antibiotics. He still had a fever the night after that high of 103, but we haven’t seen one since. He started to feel better soon after and the cultures never detected a bacterial infection. We’re not quite sure what he had, but glad it passed quickly.
He had gotten a fever in the rounds prior to this too, but typically just above the 100.7 threshold, and was probably related to count recovery (when the immune system is starting to come back). This time the fever was much higher and he also had a few other minor symptoms like headache, cough, and nasal congestion.
At any rate, the clearest signs of count recovery did come the day after that last fever (last Monday) when his platelets rose instead of falling and some neutrophils were detected. We fully expected going into Monday night for him to get his fourth platelet transfusion of the round, but rather than dropping from 22 to under the transfusion threshold of 20 they went up to 27. Every day after that they continued to rise and were up to 180 by Tuesday, which is the most recent lab we have.
Hemoglobin held pretty well throughout the round with only one transfusion needed. The labs on Tuesday had him at 8.2. That’s still low, but it’s been holding there the past week, so hopefully it goes up from here.
The ANC is/was actually still quite low at 132. The trend was up the week leading up to Tuesday, but very slow recovery. This has been mentioned before, but early on the typical threshold we heard for discharge from the hospital was above 500 and below that is considered severely neutropenic. In reality, Noah’s been discharged just above 230 in a couple rounds and just above 300 in the other. This is quite a bit lower, but we’re also now used to looking at the numbers beyond just the ANC. For example, APC was at about 630 and the ANC typically closes the gap on that number. I’d like to think the doctor knows that we’re careful about infection control at home. Of course germs can be passed, but the same is true in the hospital. At a certain point, if the counts are going to recover anyway, that can happen at home or at the hospital.
That being said, we’ve got an appointment for a dressing change and labs next Monday and we’ll be curious to see where those counts are at. This is typically the longest round for a reason and it very well could follow that ANC recovery will continue slowly. It’s also not unheard of for a patient to be discharged and then have to get a transfusion in between rounds. I wouldn’t expect that for platelets, but it’s possible with hemoglobin. We continue to do workouts every day though and his energy does not seem markedly less, so hemoglobin is likely holding.
The ANC was also too low to perform the bone marrow test for the completion of this round. As such, they’re going to do that test on the first day back for round 5 (Intensification 3) and we won’t get the MRD test results until a few days later.
As previously mentioned, we watched a lot of the Winter Olympics and round 4 sort of fittingly ended at the same time. I’ll always correlate these Games with this round as it provided the round’s room “theme” and really helped pass the time. To me, the Olympics have always felt special and even more so in a time like this. In one sense, you could say — none of these silly games really matter as compared to dealing with cancer. But you can also look at them and say — this is the kind of thing that we live for: humans working their whole life to achieve mastery of their passion. Competition, team camaraderie…some positivity in this crazy world; it’s nice. Much too much curling though. More speed-skating, less curling, please. But I digress.
So he’s back home. We’re having a great time. The kids are loud — mostly Micah. He’s a pretty energetic kid anyway but, when Noah is home from the hospital, it’s a little like the movie “Step Brothers” here. Noah also had an organization donate what they call a “Little Wish”, which was a giant Avengers Lego set (see image below). 5,201 pieces should keep him (and Micah and Mayumi) busy for a while.
Uploading a few pictures also reminds me of how I look at hair loss during chemo a bit differently than I did before. I knew that chemo caused hair loss, but certainly not how and when. The “how” is pretty simple: most of the chemo drugs are indiscriminately attacking fast-replicating cells, and AML leukemia cells replicate extremely quickly. But you know what other cells replicate quickly? Yep, you got it: hair follicle cells. Just innocent bystanders caught in the mix. And then in terms of the “when”, I probably thought the hair loss was the heaviest when counts were the lowest, correlating hair loss with clinical significance. At least in the case of Noah’s AML treatments, there’s actually a delay though. Around day 15 of this round when Noah’s counts were as zero as can be, his hair and eyebrows had started to grow back. But now 20 or so days later, when his counts are coming up, the eyebrows and hair fully disappear. It was the same way last round.
Okay, that’s enough for tonight. We love you all and over and out.
