Hello all- we continue to appreciate these good days for as long as they last. Mason had a good night last night- minimal wake ups by the nurses and the nausea was under control. He did receive a platelet transfusion which bumped him up to where he needed to be for his procedure today.

The newest chemo med that needs to be taken in pill form is thankfully very tiny- he started with 3 of these very tiny pills last night and will increase to a full dose of 7 very tiny pills this evening. For the amount he took last night, while he has had some mild nausea today, there don't seem to be any further effects for now. However, as he increases the dosage and the days of treatment continue to build on top of one another, this is likely to change.

We woke up around 8 a.m. today, and he was a champ about getting his personal care done early while we waited on breakfast.

Because his platelets were good, we headed down to a procedure room to place the new NJ tube mid-morning. Mason put on a new pair of socks he received as a gift- the nurses and procedural staff loved them (I tried to attach a picture as well...). There was some miscommunication- Mason 100% asked for the meds that would knock him out a bit BEFORE having the procedure done, but his chart indicated that he managed the line placement without any need for the meds. I was pretty proud of him for speaking up for himself when he realized they were about to start the procedure and he knew he still felt fully awake and alert. He has learned how to advocate for what it is he needs. Mason requested the "chill country" playlist from Spotify while we waited, so it was a pretty peaceful vibe. The room was decorated with cartoon monkeys (sometimes I forget we are in a hospital for children), and Mason and I had a lengthy conversation about whether Curious George had a tail in the books. If anyone wants to send us the definitive answer, that would be great. He managed the tube placement well and we are hoping to get started with some feeds as soon as possible to help him gain a bit more weight.

When we returned to the room, he managed a bowl of Frosted Flakes, two containers of whole milk, then asked me to order him a foot-long Subway sandwich while he munched on chips and a cookie from the catered lunch.

After he ate, he did a solid 20 minutes with the physical therapist, which was a huge deal. Historically, as soon as the therapist opens the door, he dives under a blanket and "sleeps." Our goal on the board was to complete PT exercises, so I was so proud of him for getting through it.

I was able to speak to the doctors who did not have much new to go over today- we will continue to monitor and try to stay ahead of any major nausea issues. He will be monitored closely for other side effects and fevers as the treatment ramps up.

The doctors did confirm one piece of information regarding the future transplant plan- while we wait on final confirmations for specific matches within the immediate family, they also did a search for unrelated donors that would be a 10/10 match (I've learned so much about this- there are really a total of 8 genetic markers that they are looking to match- and I guess in this case they were matching 10. There are other ways to accept donors that match less than 10/10 (i.e., 8/10, 7/10), but there are just a lot more complications for rejection and/or inability to fight disease in the future that can come along with that). The doctors both said that while they typically will see a handful of matches within the registry search, they have never seen a result like Mason's- he has 103 people within the donor registries that are a 10/10 match. This means that even if the immediate family is not a good match, we have 103 other options out there, just to start. This is SUCH GREAT NEWS and a huge answered prayer. (However, gold standard/best possible option to beat this disease remains an immediate family member, and we are close to having final answers on that end- so please keep those prayers coming.)

Following his lunch and therapy, Mason cashed out for a nap while I went to a different room and learned how to change the dressing around his central line. This makes me nervous and gives me anxiety in so many ways- HOWEVER- if it means we are one step closer to this child being able to go home for a few days following this round of treatment, I will learn EVERYTHING I need to know.

That's it for now. The next few days are probably going to get a bit tougher as chemo ramps up again, but for today, we have embraced another relatively good day.