Matt and I are devastated to say the least. 5% of medulloblastoma tumors are MYC amplified. 1 in 2 million children have what Alexander has. I am struggling with needing people to understand exactly what…
Posts Published by Christy Brown
Charlotte at camp and letters
I’ll add some updates from the weekend later on but wanted to add this ASAP. Our girl is already large and in charge at camp. She is doing her first sleep away camp and months…
Disclaimer: Prepare yourself for this read – tumor, pricks, EVD, and tomorrow
Waiting. We have done a lot of that, and I am confident we have only scratched the surface. As Alexander was an add-on due to the very unconventional nature of our arrival, he was scheduled…
Big updates: EVD, Dr. Brahma, and next steps
I can’t recall if I explained how hysterical I was when we learned about the tumor. When the ER doc had said that a CT scan was not clinically indicated, he also mentioned that a…
June 06, 2023
We made it! Whew. What a ride. I always say I love new experiences, but I don’t need that one again. 😂 730CT-230ET. It was about 6 hours total transit time in the back of…
The Real Deal – Fun Dip, Bus Ride, and Bees
Oh how sweet it is! The Fun Dip is here! With a 30 minute turnaround, Christy and Alexander were on the bus pretty quickly. They are about halfway to CHOA in Atlanta. Alexander is feeling…
More transfer talk
As we await Alexander to finish his MRI and recover from anesthesia, what news we have received! We still still have tears of joy in all of our eyes. We never would have understood it…
ER, CT, Transfer to Pensacola
We are only about 17 hours into having some vague answers to the past week. If we reflect back, hindsight is 20/20. Alexander’s sleep patterns had shifted, but we thought it was just a part…
Our Alexander
As you likely know, Alexander is a bright ray of sunshine that warms the world. He is positive, kind, silly, inquisitive, musical, and most of all loving–he has every perfect characteristic of a joyful child,…