Charlotte’s hoodie purchase count – at least 3 Camp store 💰 – blank check 😂 (judge me) She hasn’t asked to FaceTime which THRILLS me and Matty. This girl is epic. The world better watch…
This is reality and may be difficult to read
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…
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…
Reuniting at Scottish Rite; Ronald McDonald House
I (Matt) said goodbye to Christy and Alexander at 7:30 or so as they left in the ambulance for Atlanta. Then, I retreated to the haven of Ronald McDonald House to have a good meal…
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…