The boost treatments are underway. Alexander’s wakeups have not been any different, though we tried skipping the Precedex and letting him wake up quicker. No luck. We have resigned to getting him out of the…
Posts Published by Matt Brown
Day 20 of Radiation, Transitioning to Boost
Today was the final day of proton therapy to Alexander’s full brain and spine. It’s hard to believe we’ve been through 20 radiation treatments, 20 anesthesias, 20 stressful wakeups. Tomorrow he starts his boost treatments,…
Radiation Day 19
I ended my last post not knowing whether Alexander would get boost radiation to the areas of concern on his spine. Now we know: he will get 5 boost doses to those areas. We are…
Boost Simulation and “Please”
It’s been a while since I’ve written an update. That’s mostly because things are fairly routine, and we aren’t learning much about his disease progression or cure right now. The signs of treatment have started…
Anesthesia Rage, Filgrastim, and Charlotte
Just a short update. We settled into a rhythm of sorts this week, though the days have been pretty full. We continue to struggle with Alexander’s anesthesia rage, but we may be zeroing in on…
Post-Anesthesia Anger and the 8-Bit Antidote
We are settling in to the routine rhythm of treatment. One of the constants so far has been Alexander’s anxiety at getting the anesthesia before his radiation and his anger upon waking up from it….
Port Placement and Anesthesia Issues
Today started off with some unnecessary stress: I called for a shuttle from RMH to St. Jude in what I thought was plenty of time, but after waiting a while, I decided we would just…
Start of Treatment and Another Gut Punch
This morning started eeeaaaarrrrrllllyyyyy. We got to the hospital at 6:00 for an MRI to take another look at a little spot the docs were unsure of, but we weren’t worried. After all the necessary…
Survival Rate, Special Visitors, Fun, and Apprehension
Yesterday was a banner day for Alexander. In the afternoon, he got to have a play date with his good friend Sydney–the two of them are so cute together! In the morning, two very special…
Surrounded by Family, Friends, and Neighbors
Last night we had a much-needed gathering at home with our wonderful neighbors, friends, and family. After a month of feeling isolated from home and unsettled in every way, being in our home and feeling…