Updates have been scarce because nothing new has happened lately, which is good news. No new disasters, no definitive new findings (when it comes to leukemia, definitive findings outside the normal remission schedule tend to be bad). Ronin's "blood numbers" have been improving, which is a good sign for the first level of remission: what the doctor calls the microscope test, where they look with "merely human eyes" to see if there are any cancer cells in the bone marrow (test will be on the 23rd).
They can also use the samples from the bone marrow test to look deeper and see if the genomic mutations which they discovered are still present. If they are, we need to decide whether or not to "just" continue with chemo, or also consider an (adult) stem cell transplant. Those tend to be quite successful, but the risk of the body rejecting the transplant is significant, and almost invariably fatal.
If they see nothing in the genomic test then we're at remission level three, which means he's clean -- or as clean as possible since of course cancer can always come back, but obviously this is the level we're hoping to see. These results won't come back until sometime in October. We're hopeful but there are reasons to stay on our toes; for example another spot on his head may be a cutis, but it may also just be the result of him scratching since chemo makes hair fall out and that's itchy. Our lead doctor is firmly in the "looking good, but I can't make any promises" phase.
As we wait Ronin and I have been staying at a nearby hotel, working and reading and gaming. It's peaceful; perhaps the one silver lining of being here. If everything goes right and we don't need the stem cell transplant, our schedule from here includes four more phases over a period of at least two years, the upshot being a lot of driving and quite a few more hospital stays.
On a side note: I'd love to recommend to everyone to take a couple days and visit Charlottesville, VA, if you can. It's a tourist town built on a college town built on a Civil War town built on a Colonial town, and while in other places that might be a recipe for urban blight and horrendous traffic patterns, here it's urban charm and merely bad traffic patterns. There are a million places to eat, a ton of little stores stuffed everywhere, and every extra bit of land between buildings or highways has been turned into a tiny park or gathering space. The hospital is stellar, the college kids polite (for college kids), and if it weren't for the cancer, this would be a really nice little vacation spot. Just avoid the weekends where UVA is playing a home game.
Friends, thank you for all you've done so far. Ronin's chemo will continue at UVA for at least another two weeks, as we wait on results from a genetics test. God is good! The nurses here love our sweet boy and take him for walks around the ward, listening as he talks their ears off about music, movies, and video games. Periodic visits from family sustain us, though Covid only allows my wife OR I in the hospital at a time and chemo's immunocompromising properties keeps Ronin from leaving for now, but he and I will be moving out of the hospital sometime next week, and into a nearby hotel that partners with the hospital to put up long-term patients who need continuous care.
On that note, if you were still planning to send anything to him by way of a care package, please send it to our home address instead of the hospital. My wife can bring him any gifts or cards when she comes to visit. For that address you can email me at firstname.lastname@example.org
Thanks again, and God bless all! Blessed Solanus Casey, pray for us
Yesterday was difficult. It started with vomiting up pills, and soon after Ronin started to have odd symptoms that didn't seem to go together. He was complaining of mouth pain, and when I checked there appeared to be swelling of his inner cheek such that he couldn't close his mouth. Then I noticed his eyes straining up and to the right; when I asked him to look straight at me he tried but couldn't do it. Then I saw he was holding his jaw to one side, another thing he couldn't control. He didn't seem to understand when I asked him not to do it.
After a little while these symptoms went away, but an hour later they were back. The doctors prescribed some medicated wash for mouth sores, which are common with chemo. A little later, as we were in the cafeteria, Ronin said he was having trouble focusing his left eye. This time the doctors thought he might have eye strain.
After this he was taken down for his second spinal tap chemo injection, and when they brought him back it was clear something was very wrong. Ronin was craning his neck to the left and his eyes were rolled in the same direction; he could understand us but his speech was muffled and he couldn't seem to move his neck or eyes back to normal. His neck and facial muscles were extremely stiff and his left cheek was puffed out and hard due to a lump of muscle; I realized it might have been a more extreme version of what happened earlier in the morning, meaning he didn't have mouth sores at all. He would sometimes sit straight up and put his arms out, and in those times he would seem not to be able to hear us.
It lasted for about 15 minutes, and then over a period of about 30 seconds he was able to regain control. He was fully aware of what had happened but said he wasn't in any pain. He ate and watched youtube, but twenty minutes later it all came back. The nurses called the stroke team, which cleared him of a stroke. The next obvious possibility was seizures. One of my uncles had severe epilepsy so this was not a unlikely, but no one had any idea what was causing them. They ordered an MRI, which showed no tumors or swelling.
The pattern continued throughout the night -- uncontrolled muscle contraction, Ronin twisting himself into strange positions, then recovering. Each time lasted longer and got worse, each recovery shorter with Ro being more exhausted. They hooked him up to an EEG, after which he had an attack so bad he couldn't breathe for 10 to 12 seconds at a time. They called in the emergency team and the neurologists, who gave him a heavy dose of an anti-seizure meds that knocked him out. He was finally breathing easy, and the attacks didn't resume all night.
This morning, we got the news: it wasn't seizures at all, but rather a quite rare reaction to an anti-nausea pill called compazine that he had taken twice in the last 48 hours, including yesterday morning. It had nothing to do with leukemia or chemo or epilepsy, just a weird thing that happened.
Life in the hospital, I guess.