Today is day 9 of 10 of chemo induction 1. We left off at day 4 and the last days have gone okay. Noah’s energy has been good; he’s doing things and “wanting” to do things which is nice to see. I even heard him say he was bored at one point today.
He’s had some bouts of nausea/vomiting which I think is pretty par for the course for this sort of thing. We’d like to see appetite increase, but weight has mostly maintained. He also needs to keep flushing this chemo from his system so we’re always pushing him to drink fluids. Today I told him to drink some water and he pointed at his IV bags and said “I already am”.
As mentioned in the initial post, the idea with this intensive chemo protocol is to destroy “all” white blood cells; effectively a reset of the system. Until day 6 all chemo meds had been indiscriminate about which white bloods cells to destroy, but that day introduced a med that targeted “bad” white cells specifically. This was/is the only day in induction 1 for the med and some additional pre-treatment was needed for liver protection. He vomited twice that night and blood pressure and temperature spiked, but these are common reactions to that treatment and subsided fairly quickly.
Yesterday was day 8 and he had a spinal tap procedure that included delivery of chemotherapy into the spinal fluid. All went as planned and Noah was up and moving soon after. Similar to the side effects mentioned above, none of this is fun or normal, but a spinal tap was more routine than the central line and a few expected side effects is better than bad test results.
Speaking of test results, I noted in the initial post that we felt like when faced with two possible results, we kept getting the “worse” result. Two results today went the opposite way:
During the central line insertion procedure a bone marrow sample was taken to check for the FLT-3 mutation. This mutation is found in about 10% of pediatric patients with AML and, as I understand, results in faster replication of leukemia cells (among other things). That mutation is further split into two categories, one of which is higher risk and almost certainly requires a transplant. If the mutation were to be present, a research study drug would be taken starting the day after induction 1 (day 11) every day for a year. We received the results today and the mutation was not detected. As such, we are effectively “off study” or not a part of the research program and happily so.
The spinal tap results also came back today and leukemia was not detected in the CNS (central nervous system). The chemotherapy delivered to the spinal fluid effectively becomes a preventative to the spread of leukemia to the CNS.
We are prepared for the long road and there will be many test results with up and downs, but we are very thankful for these results.
From here, there is one more day of induction 1 chemo. His white blood cell counts have been dropping and will continue to drop after day 10 until 0 or near it and, with it, no infection-fighting ability. A key indicator will be recovery of the immune system with an ANC (absolute neutrophil count) at least above 500. Another critical indicator for this first stint of chemo will be on day 29 with a bone marrow test for blast cell percentage.
While the chemo will stop (for now), there is a delay in its effects and he will likely feel worse to much worse in the coming days with a high likelihood for infection. ID (Infection Disease team) has been and will continue to be heavily involved throughout with antibiotics as needed. If all goes reasonably well, this first stint in the hospital would be somewhere around 30 more days after the end of induction 1 (30 days after tomorrow). However, I’ve heard of cases of much greater time. That’s probably enough to cover for now but, as mentioned in a previous post, there will be at least 5 stints of intensive in-patient chemo.
Another administrative note: I mentioned in the last post that I was not too keen on CaringBridge’s aggressive and confusing fundraising efforts. We’ve had a number of visitors donate money that they didn’t realize was going only to the CaringBridge service. As such, I’m a software developer so can’t help myself and am rebuilding a slimmed down website to post updates. It’s not ready yet, but expect to see this site only include links to that site eventually. In the meantime, if you’re reading this, I would suggest that you do not make donations on this page unless you are super jazzed about giving money directly to CaringBridge. Additionally, for mistaken donations, I would urge you to request a refund.
I got Noah some walkie-talkies so we can super secret communicate throughout the hospital so I’ll end this, and maybe all posts going forward, with “Love you and over and out”.