And we’re back home again. Noah was discharged from the hospital early yesterday afternoon and the 3rd round is mostly in the books.
At the end of each round he gets a bone marrow test and spinal tap. Those procedures do not get performed before day 28 of a given round. Since he was discharged on day 26, we’ll need to go back on Tuesday to get them done. The collected bone marrow will again be sent out for MRD (Measurable Residual Disease) testing and we should receive results at the end of next week.
In the Christmas post I noted that we were seeing some signs of count recovery. Hemoglobin (8.0) and ANC (72) counts were up, but the Christmas day labs were especially good so I wasn’t sure whether the labs could be trusted. Indeed, we were seeing some signs of count recovery; the platelets did start coming up a couple days later. However, ANC was back to zero the next day and the following few days. It was likely a lab error that the ANC was showing 72.
The next day hemoglobin labs showed 9.1, which was even less believable than the 8.0 from the day before. A couple days after the hemoglobin result was 7.2 and then 6.8 the next day triggered a red blood cell transfusion, his first of the round. That took him up to 9.9.
The last five days have shown a steady recovery in counts. Similar to last round, platelets (normal range of 150 to 450) shot up quickly, going from 81 to 341 in a period of five days.
ANC started moving up a few days ago and was 231 yesterday. Above 1500 is typically the normal range for ANC. Anything under that is considered “neutropenic” and means immunocompromised. 500 is the threshold where a risk of infection is much higher. Thus, he’s still under that number, but the trend is up. Notably, APC (absolute phagocyte count) is way up, which is a broader indicator of the immune system that is inclusive of ANC. I probably should have done this long ago, but plan to add a little glossary of terms or something so I don’t keep repeating these little indicator summaries.
One nice thing about going back on Tuesday (other than getting Noah home for the weekend) is that we’ll get updated labs. I don’t expect to see any really high numbers other than platelets, but it would be nice to see hemoglobin at least stabilized and ANC above or near 500. If hemoglobin were to drop in these few days from 9.2 to, say, 8.0, I’m guessing we’d need to come back for labs later in the week to see if a transfusion is necessary. I wouldn’t really expect that though. Regardless, the most important result will be from the MRD testing.
I also wrote quite a bit about the facilities saga in the Christmas post. For a couple weeks there our rooms and the facility just kept breaking in new and interesting ways. It did get to the point where we started talking to a couple other large hospitals to decide whether we needed to move there for rounds 4 and 5. We weighed the pros and cons and ultimately decided facilities were not a good enough reason to leave, especially given we’re through three rounds, Noah does not want to leave, and we don’t really have criticism of the care and competency. The morning we made the decision to stay, the heat in our room cranked up and the thermostat stopped working. We sat there sweating and almost laughing at the situation. Later that day I needed to make a trip home and the elevator arrived with the floor about 6 inches above flush. I took the other elevator, reported the issue, shrugged and just said to myself, “okay, we’re gonna roll with this”.
Anyone that stays at a facility for 100 days or more is bound to hit some issues. It’s just that we seemed to hit them all in a couple weeks and reached our breaking point. Anyway, we’re here to stay barring the unforeseen and we’ll deal with whatever the facility throws our way. All in all, we’ll take facility problems any day over medical complications. Outside the etoposide allergic reaction at the start of this round, the important medical part went mostly swimmingly. Just one platelet and red blood cell transfusion and out in 26 days is about as much as we can ask for.
The plan is to have a couple weeks at home before starting round 4. More on that in the future, but that is by far the longest round. We’re going to keep it lazy and hopefully infection-free here. Micah is now back in swimming and goes back to school on Tuesday, so hard to keep all the germs away, but we’ll be careful.
We’ve now gone pretty crazy with the gaming systems, but it’s been fun watching Noah and Micah working together on split-screen games. Well, work together until they get mad and one quits. Ah, normalcy!
Speaking of gaming systems, we got the Nex Playground system from an anonymous donor after mentioning I wanted to purchase it. It’s a little cube with a camera that uses motion detection for games like whack-a-mole, boxing, home run derby, running, etc. It’s fun and also solid physical activity for Noah while he’s in the hospital. He tends to enjoy it more than my workouts for some reason :). Between that, some of the workouts we do together, Physical Therapy, and Occupational Therapy, I’d say he’s in a little better shape coming into the break than last time. We’ll continue daily workouts at home.
Noah is happy to be home. We knew he’d be in during Christmas and New Years. He was upbeat throughout this round, but was still obviously missing home. On New Year’s Eve, Micah stayed with family while Mayumi and I both stayed with Noah. He was on FaceTime with his brother and cousin for a number of hours and happy to be interacting. At the same time, when they were having a particularly great time laughing, wrestling around, etc., Noah had a real longing moment to be out and with them. It’s tough; you want to fix it, but there’s just not a lot you can do other than hug him and try to make up for it when he’s out. Dad and Mom are just not as fun and exciting as his brother and cousins. Even so, we celebrated and Noah chugged half a bottle of sparkling grape juice to bring in 2026.
That’s it for now. We love you all and over and out.
