We got through the first leg of this round’s treatments and Noah is doing well.
I’ve buried the lede on MRD results before, but won’t this time. He got a bone marrow test last Monday and the results again came back with no detected leukemia cells. This is another important green checkmark that, as we’ve sadly seen, cannot be taken for granted.
As mentioned in the last post, the schedule for this round is a little different than the others. Starting last Monday, he got four rounds of cytarabine (a 3x higher dose than the last couple rounds) every 12 hours for just two days.
On Wednesday, he received a single injection of Rylaze. While most of the chemo meds indiscriminately destroy fast-replicating cells, this one is more targeted. The gist is that there’s an amino acid that all cells need to survive called asparagine. Healthy cells are able to produce this on their own, whereas leukemia cells are unable to produce it themselves. This amino acid is also present in the bloodstream so leukemia cells are able to pull it from there. Rylaze provides an enzyme that breaks down that amino acid in the bloodstream, thereby starving leukemia cells of something they need to survive.
Noah’s been in remission since round 1. MRD tests after that first round did detect abnormal cells, but below the threshold for “remission” status. The next three MRD tests have not detected abnormal cells, but that doesn’t mean there aren’t any. These sorts of continued treatments are about attacking low-levels of abnormal cells that may be lingering — and from different angles.
He has responded pretty well to this round’s treatment thus far. On the second day he was down for the count and spiked a mild fever, but has been progressively better since. The fever resulted in some precautionary stronger antibiotics for a few days, but he’s off them now.
The second leg of this treatment just started and will be the same deal: 4 treatments of cytarabine and then a shot of Rylaze. Any sort of “poke” is a challenge for him, but I think he’s gotten progressively better with them. Since it was a new drug it’s always good to get that first one out of the way without an allergic reaction. Reactions are not uncommon for this one so he got a cocktail of pre-meds to avoid that.
He did end up having one reaction this round though. He’s had a long battle with the anti-nausea drug Emend. Typically he received a liquid dose of that for the first three days of each treatment. It’s kind of a Pepto-Bismol-y type substance and makes him gag. He’s great with pills, but they don’t have his dosage in pill form. For this last round they tried IV delivery instead. Unfortunately, he immediately had an allergic reaction where breathing was a struggle. I think we all came to the conclusion this drug is not worth it. New this round we did try a little scopolamine patch behind the ear and that seems fine. I don’t have much to compare to, but my sense is he’s had a relatively better time in terms of nausea throughout the rounds.
I’ve lamented the facility issues we’ve encountered. Unfortunately, they persist. We’ve been without warm water for the last few days. Last night, as temperatures dipped, the heat went out for the entire building. It got restored around noon today, but was a bit of an icebox for awhile here. I’ve tested the water a few times today and started to sense a bit of warmth. Unfortunately, there is the return of the black substance in the water. Last time around that preceded a flooding of our room. Let’s hope there is not a reprise of that fiasco. Regardless, we’re here, we’re pushing through, and is what it is. Even though our trust in the facility is absent, our love for the staff only grows.
One quick story on Micah since he gets mentioned less here: My most recent birthday I was home with Micah and heard him hammering something upstairs. Not super uncommon for him to be building, but more typically, destroying, something so I didn’t think anything of it. A few minutes later he came downstairs with a birthday card and a two dollar bill inside. It was a really sweet gesture, but turns out the hammering was him breaking into the piggy bank he wasn’t supposed to open for about 10 years (picture below). He was intent on giving a “real” gift. We have some work to do on what is a “real” gift and that doesn’t involve legal tender.
Thanks for reading. We love you all and over and out.
