The Fromwiller Family
UPDATE: Sadly, Chace passed away on September 11, 2023 at home. We will update the Fromwiller's story soon. Please keep their family in your thoughts.
Chace is a fun loving 12 year old boy. He loves football, marvel comics, star wars, legos, video games, and hanging out with his three older siblings. Chace was just a “regular” kid, and prior to diagnosis was very happy and healthy.
But in the fall of 2021, Chace began experiencing headaches. After about a month, he had a CT scan, which appeared normal. He then experienced eye crossing and was seen by an ophthalmologist, who ordered an MRI.
On January 14, 2022, the Fromwiller family was given the worst possible news; Chace had an inoperable brain tumor (DIPG), for which has no cure and palliative care was the only treatment option. His family was given a 9 month prognosis for survival.
Chace underwent 82 rounds of radiation, on both his brain and spine. He has also received multiple types of chemotherapy and was selected to participate in the groundbreaking Car-T trial at Seattle Children's Hospital, where Chace spent two months this summer. Unfortunately, due to progression of the tumor to Chace’s spine, he had to go off the trial and come back home to undergo additional round of radiation on his spine. Chace has been having difficulty eating and also keeping his platelet counts up and will be undergoing surgery for a new port and a G-tube in the very near future. Chace primarily treats at the Maine Children’s Cancer Program in Scarborough, ME.
Chace’s mom, Bethany, told us that the news of the DIPG diagnosis completely rocked their world; it felt like their life completely stopped when everyone else’s kept going. They have experienced anger, sadness, and numbness at times.
This past year Chace has faced this battle with courage and grace. He is a very happy kid and hardly ever complains, despite not feeling well. The Fromwiller’s are currently focusing on Chace’s quality of life by spending as much time together as possible and making memories. They are planning trips to Florida and to Hawaii very soon!
Last summer, the Fromwiller family was able to have a private retreat with Rett’s Roost. It was a very relaxing getaway and they were able to enjoy time together without the constant thought of fighting cancer. They enjoyed spending time exploring Ogunquit, ME and just being together. Rett’s Roost has continued to be a great support for the Fromwiller family and has also helped connect them with other local cancer and DIPG families.