It’s the last day at home. We’re back at the hospital for round 5 (Intensification 3) tomorrow morning. Business as usual at the moment.
We took it real easy during this break. We have in the others as well, but those were to be, I think, justifiably careful. This one was a little different because, on Monday, we got updated labs and counts were good. ANC was up to nearly 3,000 after being at 132 just 6 days earlier. That’s solidly in a normal range. That’s for anyone; not grading on a curve for a child in the middle of treatments. Hemoglobin was up from 8.2 to 10.3. That’s still low, but close to the bottom of a normal range. Platelets were up from 179 to 367, which is in a normal range.
As such, that we didn’t do much (visitors, playing with friends, etc.) was arguably overly cautious. At the same time, we’re not keen on going into round 5 with a sickness or infection. We can see the light at the end of this set of treatments and kind of just want to get through them. If all goes well, there will be time to “do things”.
Tomorrow morning he’ll get anesthesia again and a bone marrow test that is sent out for MRD testing. One difference from every other bone marrow test is that, this time, he won’t additionally be getting a spinal tap (and the corresponding chemo delivered to the spinal fluid). As far as I know, we’re done with the spinal taps for this protocol of treatments.
This round of chemo treatments will also be a little different as it’s spread across 9 days with a gap in the middle. As it’s been every round, he’ll receive cytarabine again — and a high dose like the last two rounds. He’ll get that on days 1, 2, 8, and 9. Also, similar to rounds 3 and 4, there will be a new-to-him chemo drug. I’ll wait until we’re into it to discuss this one a bit. I know the class and basic mechanism of the med, but it could be one of three alternatives. Regardless, we know it will be new so the typical allergy concern is there and it will be on days 2 and 9.
This new med will also be delivered via injection and Noah is particularly sensitive to needles. As such, while we’ve tried to be pretty “real” with him about the big picture of his cancer journey, there’s not a ton of benefit of telling him weeks in advance of “pokes” as we know he’ll dread them for the days leading up. He’ll probably find out tomorrow, get an injection on Tuesday, and I’m sure he’ll be fine.
As always, there’s a healthy amount of “we’ll see”, but this round is not typically as long as the last round. His counts will again go to zero so all the same infection and complication risks are present. All in all, I just don’t think the meds are quite as heavy so recovery is often a bit shorter.
It’s been a fun time at home. Noah mentioned last night that it always goes way too fast and it’s true. He finished up that gigantic Lego Marvel tower in about a week (see attached). Once we got those solid labs, we all at least took off our masks in the house and the kids have been sleeping and hanging out normally. As I started typing this post, Mayumi and the kids were busy making pasta. If you look close at the floor in the attached image, you can also see that, as the old saying goes “you can’t make an omelette pasta without breaking some eggs”.
On Friday we finally had some beautiful weather and Noah and I got out to shoot some baskets. Sometimes emotions catch you off guard and this was one for me. If we go back to the start of all of this, the first clear sign was a fever a couple weeks before everything changed. However, the first time I really registered as “something’s wrong” was when Noah and I were playing catch with a basketball a week after that fever. I remember seeing something in his eyes as he got dizzy after just some light activity. It was at that point that we decided to get him in for a doctor’s appointment and eventual blood test. Anyway, the thought crosses your mind of whether shooting hoops was going to happen. Well it happened the other day and it felt real good.
As I was typing this up Noah’s cousin also arrived so I guess he is at least hanging out with some visitors. It’s another beautiful day so time to sign off, get outside, run around, and shoot some more hoops. We love you all and over and out.
