It’s been a bit since the last post. No news has probably meant “okay” news. Noah’s been home since last Wednesday. This last week also coincided with our Fall Break so Micah was home. We typically plan some sort of over-aggressive driving vacation. The last few years have been driving trips to Maine, Yellowstone, Arizona, and Canada. Those were all great and we packed a lot of cool stuff into them. This Fall Break we did almost nothing, but it was easily the best one yet. Turns out it’s more about who you’re with than where you are.
We had some movie nights, game nights, pumpkin-carving, and just lots of joking around, laying around, and hugs; mostly hugs. I’ll go ahead and admit that the kids have become ever more addicted to screens since this all went down so it’s not like we perfected the art of family bonding or anything, but I’d take this last week every week. A week before Noah went to the hospital I had put a lock code on all the TVs and the devices in a physical lock box for some semblance of screen time control. That all fell by the wayside during this time. We still need to say “no” to the kids, but certainly some screens have helped Noah stay up and engaged when there are a lot of hours in a small room. It’s also nice that he can and does communicate with friends and family a lot on games and Facetime.
I say that news has been just “okay” mostly because we’ve only had one lab since he left the hospital and it was neither real bad or real good. Last Monday he went in for a dressing change and did a blood panel. The initial reports came back with an ANC that seemingly had barely moved since the week before which was a little disappointing. As mentioned a few times, they typically want an ANC over 500 to go home. They had let him go home with an ANC just over 200, based on other good numbers and the assumption that it would move up.
We called in later in the day to ask if we could go to the dentist with that low ANC and the doctor told us the initial labs are often wrong and his ANC was at 400. This is still not where we want it, but higher nonetheless. For all we know this number could still be that low, but we’re hopeful it has gone up in the last week and that hemoglobin and platelets have stayed at least intact. Noah gets admitted back to the hospital on Tuesday for induction 2 and we’ll get back on the daily blood panel train.
It feels a little like the calm before the storm getting ready to go back in. We don’t know how his body will handle the next round of chemo, whether there are still leukemia cells hanging out in his body, whether the AML will come right back, etc. But we do know we’re more prepared for the routines, many of the side effects, and when to call for help in the room; some things will be easier. I’d also like to think we’re potentially more resilient to the ups and downs, but that’s really hard to know until they occur.
The anecdotal report is also mostly okay. Noah’s energy has been pretty good, if not up and down. He was active early in the week and then had a few days of sluggishness mid-week. The last three days he’s had a lot of energy and we even had him doing some workouts. Not too much, but yesterday he was pushing himself to the point where I said “take it easy, dude”. As one would expect, he’s very weak and has scant endurance, but it’s really fun to see glimpses of him trying to get after it even if it’s not really feasible or advisable.
His weight is up to 30.5Kg. For reference, he was first admitted to the hospital at 29.8 and got as low as 27.1 during chemo. Between being out of shape and us really trying to get some weight on him, he’s probably got the makings of a little Baldwin belly. Frankly, I’ll be happy if he can be fattened up a bit in preparation for round two.
So, not too much to report. It’s just been so nice having our family whole even if just for a brief period. I’ve continued to sleep next to Noah every other night and it’s so much better at home than in the hospital. At the same time, with the treatments coming up we’re thankful that we’ll have him in the right place with the right experts watching over him.
A few administrative notes:
Our neighborhood (chaired by next door neighbor, Bree Katulak) has organized a blood drive in Noah’s honor on Saturday, November 8th from noon to 4:00. Blood transfusions literally kept Noah alive for about 20 days so that probably tells you how much we think of the importance of this cause. From what I understand, walk-ups are okay, but you can sign up for a time slot at https://donateblood.versiti.org/donor/schedules/drive_schedule/11624454
Neighbors and our Westfield XC program (organized by Natalie Kirsling) have set up a Meal Train. We are so thankful for this. Mayumi is a wonderful and efficient cook; her husband is not. If we can take that off her shoulders a few meals a week and still have edible (i.e. not cooked by me) food for Micah, this will be huge. More information can be found at https://www.mealtrain.com/trains/4g1q06
One more day at home and then here we go. Wish us luck. We love you all and over and out.
