Emmy was diagnosed with ATRT just one week after her first birthday.
She had a 40% resection at diagnosis and then start 3 rounds of induction chemotherapy. After her 3rd round Emmy had a complete resection and was deemed NED. She then completed 3 more rounds of high dose chemo and 30 session of radiation.
Emmy is now on an experimental maintenance drug, tazemetostat and had clean scans in July!
We pray this experimental route keeps her NED forever.
Update for Emilia's 3rd Birthday - August 16, 2022
Emmy just celebrated another set of "NED" scans last week. November will be 2 years of clean scans.
In the last 2 months she has had 2 craniotomies for subdural bleeding and a seizure from the flu but that hasn't stopped this smiley girl. Even after treatment, the fight never seems to end.
Emmy works so incredibly hard everyday in PT & OT and we are hoping she will take her first independent steps this year!!
Update for Emilia's 4th Birthday - August 16, 2023
Emmy's last scan was May of 2023, which continued to show "no evidence of disease," which put her 2 years post the completion of treatment.
These days, Emmy is a vibrant, happy, stubborn, and sassy 4 year old. She still battles the effects of her frontline treatment and surgeries every day, but she is absolutely loving life.
Her next scan is mid September, and we are hoping it shows NED so she can start preschool right after and continue loving life