Written by Owen’s Mom, Amanda
On Easter Sunday 2020, Owen hopped on his scooter and raced to his grandparents’ house for an egg hunt. Two days later, he couldn’t stand on his scooter without falling to the ground. Three days after that, Owen’s parents, Adam and Amanda, received the DIPG diagnosis, and their lives flipped upside down.
The diagnosis had followed two weeks of increased “clumsiness,” such as walking into walls and slipping on the stairs, which Adam and Amanda attributed to a growth spurt or the need for glasses. Closer to Easter, Adam and Amanda noticed a bit of a dazed look falling over Owen; he started to complain of light bothering him and said he felt like a “bobblehead.”
Prior to this, Owen was a very active 5-year-old in constant ninja training – building complex and thoughtful forts, jumping from table to couch, climbing over and under anything or anyone possible. He is also a big brother who loves his sister, who’s 18 months younger, and his 1-year-old brother. And while his big brother role hasn’t changed, the relationship and dynamic surely have. He can’t play like he could. He can’t run or walk with them. He can’t build with them. His sister’s role has shifted more to a caregiver from a playmate, such as helping him eat and ensuring he doesn’t fall – things a 4-year-old shouldn’t need to do.
Owen quickly started his treatment at Ann & Robert H. Lurie Children’s Hospital of Chicago, tackling 30 rounds of radiation like a champ. Being highly motivated by not wanting to skip breakfast, Owen laid still for each round without sedation. In navigating what comes next, Adam and Amanda consulted with many DIPG experts, including St. Jude Children’s Research Hospital and Dr. Carl Koschmann at Michigan Medicine. In the end, Adam and Amanda decided to forego a clinical trial, focusing instead on treating Owen’s symptoms and spending the summer creating memories for him, his siblings, and those closest to him.
Always one to light up a room, since his diagnosis Owen has continued to spread joy with a contagious giggle and sharing wise wisdom. “Making someone happy is our job,” Owen has declared. And that has been the mission of Adam and Amanda as well as everyone else in his life.
The prognosis DIPG brings is a nightmare. An absolute nightmare. But each day, Owen giggles with every inch of his body – his head thrown back, his toes curling, his face bright red… a reminder to Adam and Amanda that they’ve done their job because, in that moment, he is happy.
It is with aching hearts that we share that our sweet, giggly Owen lost his battle to DIPG on October 6. In the last week, Owen experienced some rapid declines, but he laughed until the end and he’ll be giggling with his angel’s wings now.
Last weekend, Team Owen participated in a virtual 5K run benefiting The ChadTough Foundation, whose mission is to raise awareness and funds for DIPG and other pediatric brain tumors. In hindsight, it was a wonderful send off. While people participated across the globe, here at home, our house served as the water station. Old friends, classmates, family, members of his care team, and even supporters he didn’t know all rallied around the love and support they’ve been putting out for O and our entire family.
We want to thank everyone for the overwhelming support. It has helped us through this difficult time more than we can possibly convey. Owen was so awesome, and we will honor his spirit, laughter and kindness each and every day. O shared some wonderful life messages in these last six months, and our favorite is that it’s our job to make people happy. We hope that’s one that has stuck with you, as well.