Before Owen East was diagnosed with DMG (diffuse midline glioma) on June 18, 2021 at the age of 4, he was a perfectly healthy, happy little boy. His parents, Erica and Brad, brought Owen to the emergency room after he became very lethargic one day. In the few weeks before that, he had also been experiencing intermittent headaches and some vomiting–which are common signs of a brain tumor that most parents might not know. Erica, however, is in the medical field, and knew something was wrong. 

At the time of diagnosis, Owen’s little brother Andrew was just three weeks old, which made everything feel even more difficult and chaotic. Erica says that finding out about the terminal diagnosis was like entering a parallel universe and that it was extremely difficult to care for and bond for a newborn while in the midst of diagnosis and treatment for Owen. 

After completing radiation and starting an oral chemotherapy medication, Owen did remarkably well for 1.5 years post diagnosis with minimal symptoms until he began to have balance issues and new tumor growth after his 6th birthday. His ability to walk slowly declined to needing a walker and then a wheelchair shortly before the end. Erica says It was hard watching him lose the ability to do his favorite things like racing /running and dancing. Owens’ decline at the end was quick and within a 2 week period from his last day of kindergarten, he could no longer stand, hold his head up, swallow and had difficulty talking. He slept more and more and passed peacefully, with his parents, in their bed where he always slept, on June 30, 2023. 

Owen was spunky, mischievous, funny, loving and kind. He loved to play pranks, make fart jokes and songs, and do goofy dances he made up on the fly. He had a wonderful singing voice and could often be found belting out his favorite songs even in public. Before his cancer progressed, he would often run fast like his heroes, Sonic and Buzz Lightyear. He LOVED school and mac and cheese.

When asked how they are doing right now, still so soon after their loss, Erica confided in us,

"We are only 2.5 months out and our grief changes from day to day. Sometimes a small trigger can spiral into a very sad day. Other times I watch videos and am able to smile and laugh as I’m brought back to that moment. Andrew is now 2 years old and we try to keep Owen's memory alive by showing him videos and saying his name often."

Erica’s advice to other parents facing a terminal diagnosis is to "treasure every moment and let your child have what they want to keep them happy and comfortable." She also told us she is thankful that Rett’s Roost has helped them find a community of parents and families who have a shared experience, which makes them feel like they aren’t alone. The East family will be attending a bereavement retreat this coming November.