It’s been 2.5 months since the last post. Things are going well. I guess this is basically a recap of the entire summer, so let’s get started.
The latest monthly labs were on Thursday. We’ve gotten 3 monthly labs since the last post. First, hemoglobin has been stable around the high 12s since May 20th. Platelets have also been up for months, hanging around 230 right now. Both of these are in normal ranges; not necessarily dead center of the normal range, but just fine.
ANC is still not fully recovered, but has crept up to 1,800. I’ve been quoting the bottom of the normal range as 1,500, but it’s actually 1,300 for a boy his age, so a little more breathing room above neutropenia. From what we understand, it is very common for ANC to take at least 6 months to recover. We’d like to see this continue to creep up, but his blood composition even now is technically normal.
No highly sensitive MRD tests are performed at this point. We can only go by these quick blood tests, but as we’ve seen, this sort of leukemia would likely present itself rapidly were he to relapse. We’re mostly looking for sharp decreases in these counts or the presence of significant numbers of blast cells. Well, looking to avoid that.
I will not post a picture, but Noah got, by far, his worst wound in the last year with a badly skinned knee. This is the sort of thing you very much want to avoid when you’ve got no immune system and low platelets. However, it was a nice way to confirm those systems are now working as we saw a scab form and heal up. Of course, that was after skinning it again once and then ultimately picking the scab off like every kid ever. Never would we have imagined we’d be using a skinned knee as a medical monitoring device.
It’s been a good, uneventful summer. I mentioned the Florida trip in the last post and we did an additional one to Michigan’s Upper Peninsula in early July. There’s a few pictures from that trip below. On the way there we stayed in Traverse City and hiked the nearby Sleeping Bear Dunes. This is a 3.5-mile round-trip hike with 5 fairly aggressive dunes. I kind of assumed Noah might be done after the first one, but he was strong for the entire thing. A week or so prior to that we’d started some daily family runs, so that probably helped.
The Upper Peninsula is beautiful and the kids had a great time hiking and kayaking. For the kayaking, we paired Noah with me rather than Micah, specifically because Micah tends to be an Energizer Bunny. But, of course, Micah fell asleep 5 minutes in and Mayumi had to go it alone for half the time. Noah was awake and paddling the whole way. The best laid plans and such.
We kept up with the runs okay until the really hot weeks started and it got a bit hit-and-miss. We’ve found that on really hot days Noah is pretty much guaranteed to have a dizzy spell if we try to do a run. We’ve brought this up with the medical team and, given he has always been fine shortly after, there’s not a lot of concern there. Even so, it’s something we’ll continue to monitor, and there’s no reason to push it.
There’s a few pictures below of some other happenings: a Harry Potter Symphony on the Prairie concert, the Indiana State Fair, and Holiday World. Mayumi and our neighbor Rebecca took 6 kids from 3 families to Holiday World mid-week and reports were that it was a blast for all. Oh, and a Harry Potter-themed cake for Noah’s 11th birthday!
This is really the season of starting/re-starting things for our family. Kids just started school and cross country this past Monday, and I’m starting a new job next week. As a teaser, Noah also got some work done on his bedroom; I’ll post more on that when we have some photos/video available to share.
This first week back at school and sports went well. We didn’t do a great job getting the kids up early or off devices this summer, so I expected this to be a rough one for Noah. He’s had more energy at night than I would have expected, though. He’s done fine in cross country — no brutally hot days so far, and the distances and pace are manageable. We’ll work with his teachers to help him with any difficulties getting back into the school routine. At least as it relates to the social aspect, it seems he’s reacclimated quickly.
I’ve said this a lot, but we don’t know what the future holds. Still…what can’t be taken away is a fun vacation, that first day back at school, running with the cross country team again, playing with friends in the backyard, sitting in a movie theater, etc. Not to get all sappy, but little things that we took for granted before sometimes hit me with a wave of emotion. There’s a picture below — Noah running down the last dune — that got me pretty good. I mean, it was probably just sand that got in my eyes.
That’s it for now. There will probably be another post regarding bedroom updates soon-ish. Consider yourself updated! We love you all and over and out.
