Harry was officially diagnosed a week after he turned 1. His surgery to remove the clementine sized tumor from his brain was two days prior to diagnoses. His protocol called for two rounds of induction chemo and three rounds of high dose chemo with stem cells possibly followed by focal proton radiation.
He did pretty good with the induction chemo rounds with some side effects that were minimal. The high dose round on the other hand, landed him in the ICU for a couple of weeks due to VOD.
After that, and several discussions with his oncologist and several others, we decided that more high dose chemo was not what we wanted. He did have about 6 weeks of focal proton radiation in July and August. We are currently in talks with his oncology team about next steps.
We know how much of a beast ATRT is and we want to do everything we can to make sure this beast stays away!
Follow Harry’s Journey: