It’s been a bit since the last post. The important news is Noah is and has been good. There’s been some excitement around here regarding facilities so I waited for some dust to settle on that topic.
We’re nearing two weeks off chemo, day 18 of phase three, and ANC (the immune system) has been zero for the last week. There is typically a delayed effect from the chemo before ANC really starts dropping and there was no difference this round.
Noah got his first transfusion since early last month five days ago. His platelets were “down to 11” (long live Spinal Tap) and 20 is the threshold to transfuse. The transfusion bumped them to 78 and they’ve been moving down, but that has been gradual.
As of this morning, we’re seeing some signs of count recovery. The platelets dropped to 33 two nights ago, but only to 30 last night. Last round we saw the platelets start to “fight back” just when we were sure another transfusion was imminent.
Hemoglobin has been dropping very slowly this time and was down to 7.5 two nights ago. 7 is the threshold for transfusion so we were almost there. However, this morning that is at 8.0. Either that is lab variation or hemoglobin is starting to make a comeback.
The other somewhat surprising thing about this morning’s labs is that ANC was at 72, which is above what I’d typically write off as “effectively zero”. Even just tomorrow morning’s labs will give us a clearer picture of whether we’re headfirst into count recovery or just the early signs of it.
Either way, we went into this round expecting between 4 and 6 weeks so we’re not impatient at all. The other positive is that, while labs are a critical component, there is also the clinical assessment — how does he look and feel? He’s been fairly strong and energetic throughout. This has been the case through most of rounds two and three and even the second half of the first round. The only time labs and clinicals were really out of sync was that second half of round one when the marrow was just real stubborn with recovery.
I mentioned facilities earlier and that’s been kind of a wild ride. We got a different room for this round and it was a nice change of pace…for a while. Unfortunately, when we got in the room, the shower was dirty, moldy, and needed some re-caulking. They got that done, but then we found that there was no warm water. We took Noah down the hall to shower, which was still okay prior to his immune system dropping.
They got warm water working about a week in just as he became confined to the positive pressure room. But then we found that the warm water stunk and had black residue in it. Then the fun really began. Our bathroom sink drain started spewing out dirty water and flooding the bathroom. About that time, I started to wonder if Noah was better off in a random hallway than in that room.
One ongoing problem is that the hospital has three positive pressure rooms and has been juggling four patients with AML that need one of those rooms for long-term stays. All of these patients have breaks in between rounds so this has sort of worked, but I know at least one patient spent time on a different floor and there is an unspoken (maybe even spoken) urgency to get patients out of rooms. Nothing unsafe, but the urgency is there.
Well, our room was now unusable so the hospital had to figure out something quickly. They decided to put us in an isolation room on the floor above. This probably doesn’t sound like a big deal, but that is a floor that holds children with infectious diseases and we’re in the middle of not just the holiday season, but the other “season” of flu and RSV and whatever else. Just moving Noah out through the hallway introduces some risk let alone moving to that floor.
We also had concerns of nurses working on that floor and intermixing with children with infections. They try to do their best to avoid a nurse being assigned both a patient with a low immune system and one with an infectious disease, but there’s only so many nurses on a given shift and things happen that make it difficult to fully limit interactions. The family beside us also consistently had a contingent of 10-15 Amish people all over the floor with their kid who had an infection. This didn’t lessen the stress around the risk of infection situation we were grappling with.
The hospital has worked hard to try to make things work, but this is just an old, beat-up building and there is no magical fix. There have been campus-wide water issues though our room seems to have taken the brunt of it. We did have a nice development yesterday. A patient on the original floor’s counts went up just before Christmas and they were discharged from the hospital. We’re really happy for that patient; let’s not lose sight of the fact that Noah’s not the only kid here and knowing that a kid got out just before Christmas gives us all a jolt of positivity. This also meant that this patient’s room opened up and we geared Noah up to make the long trek downstairs to the room (see the photo below with the get-up). It’s a nice room and Noah said he got his Christmas wish of getting back to floor 3 and all his nurse friends. We did find that the shower needs to be fixed, but that is at least a fixable issue.
We truly love the staff here and it would take a lot to consider treatment elsewhere, but we do have to at least consider whether this will be workable for round 4. I’m sure they “can” make it work, but we also know there are some facility issues that need fixing (the plumbing in that room) while others cannot easily be fixed (the number of positive pressure rooms on the third floor). This fiasco has been “a lot”.
That being said, Noah has not gotten an infection (knock on wood) and things have gone well; nothing is more important than that. The staff here also greatly contribute to the overall treatment and we’re not going to discount that. Case in point, one of the pictures below is when a bunch of nurses came up from the third floor for their round of Noah’s Kanoodle Tournament (more on that at some point).
You probably know that today is Christmas. A few days ago Micah said he’d rather have Noah home than have presents, which is both heartbreaking and touching to hear. As much as this has split them up physically, they are closer than ever. Certainly it would have been nice having Noah home, but we made it work. I stayed at the hospital last night and Mayumi is staying tonight. Noah put a cookie out for Santa, we had a Christmas tree, lights, etc. This morning Noah woke up and said “whoa, that’s a lot of presents”. We opened them as a family even if it was together via FaceTime. Noah (and Micah) got an embarrassing array of presents this year. We’re historically a little on guard against spoiling the kids but, like many things, that’s out the window this year. There have been many tough times, but Noah’s boundless joy has kept us all upbeat and that has extended to an unorthodox Christmas. You can see a few smiles in some pictures below.
Thanks to everyone who has helped us throughout the holidays. They are and will be memorable for their difficulty, but also for the outpouring of love we’ve experienced. We love you all and over and out.
