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…
Tumor Board
I just wanted to expand on Christy’s expression of anger yesterday. I feel it too, in waves. We are not angry at people; we are angry at the obscene injustice of this situation. Hours after…
Tomorrow – come see us and then back to Memphis
Take a look at our amazing Charlotte thriving at her incredible camp! We were delayed and delayed and just landed. Mama and Daddy picked us up just now! Party at our place tomorrow and all…
Christy is second guessing
I don’t know what to do. We gained addition information today that is so challenging to learn on a day like today. This dose is extremely high. I don’t think I will ever know what…