Not much to report. Noah’s been home since January 2nd. It’s been a nice long break and we go back this Tuesday. We’re gearing up for round 4, which is by far the longest; we’ve heard 8 to 10 weeks.
First, a bit of recap on numbers since he’s been home. It’s a bit of a guessing game while he’s here since we’re not getting daily labs, but we did get them a couple times. On the 6th, we went back for the end-of-round bone marrow test and LP. The labs that day came out at hemoglobin of 10.2, platelets of 475, and ANC of 506.
A quick aside: You’ll notice that each of these indicators can now be hovered (click on mobile) for a summary. Only the first instance of each term in a given post gets highlighted to avoid clutter, but all display the summary when hovered. If you scroll to the bottom of the post, you’ll also see that any common terms in this post are listed; previous posts are also back-filled. You can also toggle to see the run-down on all common terms, which will be ever-evolving. For example, this exercise uncovered that I’ve been mistakenly referring to Noah’s central line as a port from time-to-time.
Those counts are about what we would have expected. The platelets again higher than the typical range and ANC just scratching above the severe neutropenia threshold. The more important thing was the MRD testing. We got that back later in the week and no abnormal cells were detected. Again, this does not mean there are not any, but none are detected. Yes, we probably predicted this, but we will never take any of these tests for granted.
On the 13th he went back in for a central line dressing change and got some updated labs. Hemoglobin was up to 10.6, platelets down to 380, and ANC up to 840. That puts platelets in a more normal range. On Tuesday, we’ll get labs prior to starting the round, so they will likely be at their highest point. It would be nice to see hemoglobin over 11 and ANC nearing 1,500 similar to the start of last round. These are, of course, going to tank during the round, but it helps to see the trend of recovery after.
I’ll plan to outline the round 4 treatment (Intensification 2) once we get into the thick of it next week. There will be a new chemo med which is a bit anxiety-inducing, but hopefully no surprises similar to the etoposide reaction last round.
Back here, Noah’s spirits and energy have been really good. He still gets tired easily during workouts, but rather than being visibly “done” after a workout, there’s energy still in the tank. We always play catch with a hacky-sack or tennis ball to end the workout. We both like playing catch anyway, but it also helps to keep hand-eye coordination maintained and to monitor for potential neurotoxic effects of chemo. Strength, balance, and coordination are all things that will be continually monitored. They seem to be pretty okay currently, but we’ve noticed some involuntary shaking/tremors from time to time since round 2, which is a common side effect.
Noah and Micah have had a blast hanging out. Once we got the labs with a little higher ANC we let them sleep in the same bed. They’ve probably both gotten to sleep later because of it, but trying to split them up does not go well, and it’s hard to beat all the joking and laughing. We also tried to all sleep in the same bed, but none of us slept real well that night. There continues to be much gaming. I bought two more controllers and even got Mayumi into this couch co-op game called Brotato. I don’t mind screens at all when we’re all playing together. We’ve also had one or two friends and family over for a few hours at a time. The kids also love Lego sets and the Home Alone set (thanks Tom and Carolyn West family!) pictured below is pretty incredible. We’re still very careful with masking of visitors, hand-washing, etc. during this flu season, but also trying to balance with some human interaction before he goes back.
That’s all for now. We love you all and over and out.
