In Memory of Maddox
“I am determined to move the needle in the right direction so that no 16 year old has to come home after a year of debilitating treatments, only to know that they will not live to see high school graduation, never get their first job, never have their first date or first kiss, never go to college.”
“Sometimes, the science just isn’t ready. What started for our 15 year old son, Maddox, as back pain in late September 2023, spiraled into a Stage IV Alveolar Rhabdomyosarcoma diagnosis a couple of months later.
We didn’t ask for a prognosis when Maddox was first diagnosed. We were too afraid to hear the answer. However, as time went on, we learned that his type and stage of cancer had a 5-year survival rate of around 20-30%.
We also learned that if he DID manage to reach remission, his chance of relapse was almost 70%.
Maddox’s cancer had the PAX3-FOXO1 mutation which means it was very aggressive and high risk from the moment it started. Chemotherapy, full brain and spine proton therapy, and photon radiation did not stop his disease, nor did it keep his disease stable.
What chemotherapy accomplished was nausea, weakness, hair loss, anemia, immunosuppression, and terrible neuropathy in his hands. To the point that he lost most of his fine motor skills.
Proton therapy triggered a delayed reaction known as radiation somnolence, which manifested in Maddox as incredibly severe fatigue and food aversion which caused him to lose almost twenty pounds in two weeks.
Maddox had terrible odds on both ends. How much was he expected to endure to maybe (at best) reach remission - only to know that he would most likely relapse? His condition deteriorated despite his treatments AND because of them. His team at Cincinnati Children’s did absolutely everything they could think of to keep the side effects to a minimum, but it’s a battle that cannot be won.
Despite a valiant 14-month effort by Maddox and his care team at Cincinnati Children's, Maddox passed away on January 24, 2025. Before Maddox passed, he asked me and his dad to make sure people learn something from him. We are determined to keep our promise to him and do our best to support research that will one day produce a treatment to provide these children with longevity, without hijacking their quality of life.”
-Submitted by Maddox’s mom Jennifer, May 2025