My name is Michele. I am the mother of 3 amazing daughters. Ryann 29, Jordann, 27, and Regann 21, and I am The Nana to Scarlett 20months, Beau 20 months, and Maeve 3 weeks.
I need you to pray! Pray that my Ryann has continued strength and pray that Beau is okay.
On September 27th Ryann called the doctor because she was concerned about Beau. His balance was off for about 3 weeks and the day before she called he stopped walking and started crawling.
She took him to CHOP and they admitted him late that night and scheduled an MRI for Saturday morning, September 28th. They found a mass 2x3in located in the 4th ventricle of his brain between his cerebellum and brain stem.
Sunday, September 28th he had a drain placed through the top of his skull to drain the cerebral spinal fluid that was building up.
Monday, September 29th he had a 10 hour surgery to remove the mass.
Stage 3 Anaplastic Ependymoma was fully resected.
A week later he had a spinal tap done to make sure there were no cells that had spread. They did not detect any.
He started intensive PT, OT, and speech therapy for 6 hours a day. All of skills are back to baseline and his speech has exceeded baseline.
He has had 25 of 30 proton radiation treatments and he will need 3 additional regular radiation treatments of which he’s had 2
There is a 50% chance it will come back. After 5yrs if he still has had no recurrence the chances go down to 40%. And continue like that in 5 year increments for the rest of his life. He will have an MRI every 3 months for the 1st year, then every 6 months till he’s 10, and then it will be yearly.
He’s doing really really good so far only 6 treatments left.
Ryann was 7 months pregnant with her 2nd child when we found out. She had a baby girl, Maeve, on November 15th.
Thank you in advance!
