We are finally back on the treatment path. We checked in to Comer Children’s Hospital yesterday morning, expecting chemo to start by the afternoon. We waited for about 7 hours in a holding room before…
Posts Published by Matt Brown
Treatment Starting Again
Today was the last day of our inter-treatment period. We had great experiences with friends and family. Tomorrow, treatment starts again. We thought we were going to go to Lurie Children’s Hospital for treatment, but…
Chemotherapy in Chicago
After much deliberation about the best options for Alexander and our whole family, we have decided to have Alexander’s chemotherapy done at Lurie Children’s Hospital in Chicago. St. Jude has been very good to us,…
Appetite Stimulant and More Choices
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…
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…