Mayumi shared the first post on Facebook last night. Now that most have been able to read an overview, we’ll try to post more updates. I’m playing a little catchup here so this one is a bit long again.
Today was day 4 of 10 days of chemo.
Day 1 started with an echocardiogram. We won’t find out for a few more days whether he has the FLT3 mutation but, if he does, there is additional heart monitoring that will be involved for a research study medication that would be taken starting on day 11. This echo was part of that.
Around noon on day 1 he started chemo. In preparation, he received a strong anti-nausea medication which made him very drowsy; most of the day was sleep and malaise. Temperature continued to be a problem, but Tylenol still kept it in check. The chemo schedule as of now is twice a day, noon and midnight.
Day 2 temperature started at 103, which is the highest we had seen. ID (Infectious Disease) has been and will continue to monitor cultures for bacteria. That morning a more extensive test panel was ordered to see if anything was causing the temperature spikes. Nothing was found and the dominant hypothesis continued to be that this was a side effect of the leukemia.
Noah was very weak and tired again most of day 2, but in the afternoon after the Tylenol kicked in had a burst of energy for a few hours and seemed like “Noah” again. He played with some toys, read some nice cards from schoolmates, and had a couple video calls with family. A headache and tiredness kicked in and he was pretty well out of commission the rest of the day.
Day 3 he woke up without a temperature and had a pretty good day. My brother Luke is visiting from Iowa and got to see him and talk to him a bit through the window. We also got Micah in the room. This has been hard on him and it was really nice for him to see his big brother. This is likely the last he’ll be “in the room” for awhile, but we’ll see. As Noah’s white cell counts decrease we’ll increase the amount of carefulness.
Mayumi and I have been switching who stays with Noah every other night. I stayed last night and we enjoyed watching the Hawkeyes dominate. I predict a magical season if they can play UMass about 9 more times.
Today Noah had another day without a fever and I’d say it was a “good day”. We played some board games and watched some sports. Since it was a quiet Saturday and Noah’s counts are still up, the doctor allowed him to walk outside the room and even to the “outside outside” in the rooftop park. It could easily be another 20 days until he gets outside the room so was a welcome escape.
That pretty much brings us up to date. A few more random notes:
- I appreciate having this CaringBridge service to post updates. What I didn’t know until after that first post was that the service is pretty aggressive about asking for donations. That’s mostly fine; they provide a good service and need to keep the lights on. That being said, I do want to make it clear that none of those donations are going to Noah or providing for his care. I’m not sure whether we’ll have anything like that in the future, but we do not currently. I just don’t want anyone to be confused or feel like we’re asking you to donate to CaringBridge.
- I know that some have expressed an interest in supporting in potentially “medical” ways. We’re still learning about what sorts of things that would be helpful. Our neighborhood has approved a blood drive which is a wonderful thing and we are so thankful for such caring and thoughtful neighbors. Blood banks are always in need and this is a great way to help. Our doctor also said that “platelets” are often what is in most short supply. Noah seems to be holding onto blood slightly better than platelets, but he’ll continue to need ongoing transfusions of both.
- We don’t know if Noah will need a bone marrow transplant and it’s a bit overwhelming to consider at this point. At any rate, what I can say is that, while genetic variation is typically helpful for disease resilience and evolutionary adaptability in populations, it is particularly problematic for transplants. Our children are Asian and Caucasian and, as such, neither of us can be a match. There is a 25% chance of Micah being a match. Could you or one of your mixed-race Caucasian and Asian children be a match? From what I understand, it’s unlikely that they would be on a timeline that would fit Noah if you/they are not already in the “pool”. At any rate, it seems to be just a cheek swab to get in that pool and, even if not a match specifically for Noah, you could be saving a life in the future. EDIT: If Noah were to relapse in the future, he would almost certainly need a transplant. Thus, you/they would be already in the system and a potential transplant match.
That’s all for now. Thank you for the continued support, prayers, and happy thoughts. We love you.
