Whew, it’s been a whirlwind of a week and it’s not over yet. The very short report is: the bone marrow test was yesterday, results won’t be until Friday, and… Noah just got home today. What?!
Okay, to fill in some gaps here: Yesterday’s procedures were a lumbar puncture and bone marrow test.
The lumbar puncture (spinal tap) was again testing for leukemia in the CNS (Central Nervous System). Chemo was also delivered and, as far as I know, this will be the case anytime this procedure is done. We already got the result of this test and, as it was a month ago, no leukemia was detected in the CNS. We were pretty sure this would be the case, but you never know.
The bone marrow test involves collection of a liquid and solid sample. The first time this was attempted over a month ago, the bone marrow was full of blast cells and too dry for a full liquid sample. There was still enough of a sample to determine the absence of the FLT-3 mutation. This took 6 attempts at collecting a bone and marrow core so Noah has a lot of marks around his hips. During yesterday’s procedure it only took one attempt.
As mentioned, the results of this test won’t be available until Friday. This is MRD (Measurable Residual Disease) testing, which can detect one cancer cell in as many as a million cells depending upon various factors. The idea here is to test whether there are still cancer cells present. The hope is, of course, that this first round of chemo results in undetectable cancerous cells. I say “undetectable” because the test is not guaranteed to detect everything.
In the last post, I noted that Noah’s counts were very low. Just in the last few days those have crept up a good bit. The ANC is still low (just over 200) and they typically want over 500, but the sense from the doctors is it’s ramping up now. Probably moreso, some other key levels have either held or increased. Hemoglobin has held for 5 days at 9.5. Platelets held in the 50s for five days and then jumped to 98 today. I’m sometimes skeptical of jumps like this because I’ve seen lab errors / variability for hemoglobin, but perhaps that’s less of a problem for platelets. Neutrophils also jumped to 11% today and monocytes at 34%. Again, I’ve seen swings there, but the trend is good. The APC (neutrophils + monocytes) we wanted prior to doing this test was 300. Just five days ago that APC was sitting at 60. Today it’s all the way up to 945.
Regardless of the result of the MRD testing, induction 2 will happen. In between induction 1 and 2, if possible, the doctor wanted to get Noah home. Due to the testing being done and his counts being “good enough” the doctor wanted him to get as much time at home as possible. The next steps are pretty clear: if cancer cells are detected, Noah will be re-admitted to the hospital next Tuesday. If no cancer cells are detected, he’ll be here for about two weeks.
While we knew if counts went up he’d likely get to come home for a bit, it’s probably a good day (or three!) earlier than we might have expected. At the same time, we’ve never been so thrilled to get booted from a place. As I’m furiously typing this update I can look over to my right and see Noah and Micah sitting together on the couch. It’s hard to predict what the future holds, but he is here NOW and nothing can take this moment away.
Mayumi and I are going to have to learn to play nurse posthaste. We got a short session on the central line flush and heparin lock today. We’re going to need to do that ourselves on Saturday which we’re a little nervous about, but we’ll get it done. We’ll need to monitor him closely for various symptoms, most notably, fever. Between the low counts and having a central line, any fever requires immediate intervention.
When we left the hospital, Noah’s first taste of fresh air ended up with a dizzy spell and sleepiness. At the moment (just about 8pm) he’s got a lot of energy. We used wipes for a “shower” rather than a real shower. We’re probably going to tackle a shower tomorrow, but that can be tricky to avoid getting the central line dressing wet. We’re really hoping to avoid having to change that dressing because we’ve watched nurses struggle with that process, let alone us yahoos.
Additional notes:
This note deserved a post in its own right but, like I said, this week has been a lot. Remember back when we said getting an Asian/Caucasian match for a bone marrow transplant was almost too overwhelming to consider? Well, we sent off Micah’s sample almost a month ago now and it seemed like kind of a shot in the dark that he could be a match. The probability of a sibling match is 25%. Sometime in the last few weeks I may or may not have stated something to the effect of “I wish we’d had like 16 kids” (Mayumi was right again). But, but…Noah’s one and only sibling is indeed a full match! We hope it does not come to it to need a transplant, but getting to remission the first time will be hard enough. If we get there, the next battle would be staying there, and relapse is sadly common. In the case of relapse, transplant would almost surely come into play and it’s comforting to know his best fighting chance could come from the little dude sitting beside him.
So, yes, he is at home and I’m guessing some are wondering about visitors. Similar to the hospital, while we wish we could just say “come on over”, his counts are still low and we want to try to avoid any infections as best we can. The hospital room wasn’t perfectly sealed and neither will be our home. Micah will be here and also attending school every day. Regardless, we’re going to keep it to just us four in the house. Perhaps there’s other creative ways he can have some interactions, but we’ll play that by ear. On a related note, two people just left our house today to make room for Noah: my parents. They drove out the next morning after I told them about Noah’s situation and had been here ever since providing emotional support, cooking, cleaning, and, critically, being there for Micah. We can’t thank them enough and we love them so much.
Now, if you’ll excuse me, I’m going to go hug both my boys at the same time. We love you all and over and out.