It’s day 36 of round 5 (Intensification 3) and Noah just got discharged. This is the same day he got out last round. The only difference is…ideally this is his last.
This last round was quite the ride. First, Micah got the flu, which threw off our routine a bit. But that was just a warm-up for the real test when Noah got a bacterial infection. It got a little precarious there for a bit when sepsis was setting in, but the staff got him through it without a visit to the ICU. This past week he’s gotten stronger each day with no fevers and no cultures growing.
I mentioned in the last post that there may or may not be a fungal infection. He did have one general screening that came back with a slightly elevated marker. It suggests there could be an infection, but a moderately higher level coming off a bacterial infection and chemo makes it harder to tell. They took another lab today and, if it comes back higher in a week, they’ll figure it out. It’s not something ID (Infectious Disease) is too concerned about.
As for the other counts, we saw the first little bit of ANC six days ago. There were two days of negligible ANC and then it bumped up above 300 four days ago. It’s bounced around between 200 and 350 the last few days. It hasn’t really taken off, but it’s at an okay range.
In the midst of the bacterial infection, he got a couple of blood transfusions. It looked like hemoglobin might drop below 7 a few times since then, but has ticked up the last three days and is now at 8.4.
He got three platelet transfusions during the struggle with the bacterial infection and five overall this round. Platelets have tended to be up pretty high prior to discharge. This time around they didn’t stop going down each day until two days ago and they’ve barely inched up to 56 from 48. I would have liked to see a bigger bump, but I think they’re likely on their way up. We will monitor for any signs of platelets dropping like easy bruising, petechiae (little red dots on the skin), or a nosebleed that won’t stop.
Similar to other rounds, it’s not completely over. We’ll need to go back next Tuesday for bone marrow MRD testing. If all is well with that testing, probably sooner rather than later, he’d get the central line removed. If he were to relapse he’d need a central line, but the risk of infection outweighs holding out for the thing we obviously hope does not happen anyway. There is also ongoing maintenance on the line. We’ll flush the line and heparin lock once a week here, but will also go to the hospital each week for a dressing change.
Related to this and the still low counts, we’re unlikely to have Noah attend school this year. Hopefully counts will be up a good bit when we go back next Tuesday, but we’ll ease into activities.
I’ll keep this last part short for now, at least partially because it hasn’t even really sunk in yet for me. As is the nature of these things, we can’t know if we’re closer to the end or the start. We do know we’re incredibly thankful for all the support and love we’ve received from staff, friends, and family. And we’re incredibly proud of Noah’s strength, attitude, and perseverance through it all.
When patients end their treatment at the hospital they do a “bell-ringing ceremony” (ceremony on the same floor with staff members). Noah’s is scheduled for a couple weeks from now so today was pretty low-key. Even so, the handful of nurses working today couldn’t let Noah leave without a little “pre-bell-ringing” practice and cheers. And we brought a cake (pictured below). I told the nurses not to be surprised if I accidentally show up at the hospital tomorrow out of habit.
Anyway, we outta there. We love you all and over and out.
