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 is best. No person should ever endure this. Period.
Browsing Category Cancer Update
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 this means. A gross total resection does not mean cancer is even close to gone. It was the best that surgery could do. We have no option but radiation with…
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 for approximately 4pm. The nurse took us to holding at about 4:15. The start time was 4:55 with an allotted time of 80 min. After kissing our angel, I went…
DINNER!!!
Alexander is now watching Bluey and eating what has to be the best-tasting cheeseburger with mac and cheese and apple juice he’s ever had! After having to console him through many hours of no food or drink, I’m at least as satisfied to feed it to him as he is to eat it!
EVD
Alexander is now back in his room in PICU after the placement of an external ventricular drain. The anesthesia is wearing off, and we have gotten him to go back to sleep as that happens. The drain line is stapled to his head—it’s the dark orange tube visible in the picture. When he first got to the room, he was uncomfortable, but a trip to…
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 CT scan probably wouldn’t show anything, because it would only reveal large masses that are 0.5 cm or larger. So when he said the mass is 4.2 cm across, I bolted from the…
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 and get some rest before my 5:20 am flight to ATL. I’m now sitting on the plane in Atlanta, ready to grab my bag and a Lyft to Scottish Rite….
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 an ambulance with no air suspension. We are here and have seen a doctor. Alexander is being his angelic self but is absolutely exhausted. We both are, but I am…
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 a bit off which is understandable given steroids, general anesthesia, a 3 hour MRI, and a total of a 5+ hour ambulance ride. And that is just today. He wanted…
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 before. We couldn’t. But when we experienced being helpless to provide relief for our normally joyful little 4 year old boy, we changed forever. Our entire family continues to be…