As told to Derek Clouthier
Few things are as devastating for a parent as to learn their child has cancer. Maximilian (Max) Schuster was diagnosed with acute myeloid leukemia in October 2017 — he was four years old. Max’s parents, Dayna and Adrian, first noticed something might be wrong when Max’s gums became inflamed, recessed and bleeding. While Max was staying with his grandparents in Edmonton, a doctor ran some blood tests and made the surprising diagnosis. Max began his first six months of treatment in the pediatric oncology unit at Edmonton’s Stollery Children’s Hospital. After the initial four rounds of treatment that included chemo, surgeries and blood draws resulted in no remission, Max received a bone marrow transplant at Calgary’s Alberta Children’s Hospital. Constant treatment for the effects of graft versus host disease (where the donor cells attack the host as foreign) followed, and in October 2018, Max’s cancer returned, impacting his lungs and liver. A special drug from the U.S. enabled Max to get well enough to receive a haploidentical transplant, with his father, a half-match, as the donor. Max was released approximately two months after the procedure, but was soon hospitalized in Kelowna, B.C., due to an infection to his central line. The leukemia returned, and on Sept. 25, 2019, Max spent his final six days at the Rotary Flames House, passing away Oct. 1. To honour their son, Dayna and Adrian started The Maximilian Schuster Foundation, and Dayna now works as the director of human resources for the Alberta Cancer Foundation. Dayna talked to us about her experience:
“Until you have a child diagnosed with a life-threatening illness and you spend the bulk of your life in a hospital, you can’t truly imagine the fear, pain, trauma, exhaustion and anger that comes with this battle. But, this experience also brings a remarkable amount of joy and life lessons. It teaches you that every day is worth fighting for, that smiles and laughter can bloom in darkness, that hope is a powerful tool, that people will show up when you need them most and that our children are so much stronger than we think. Max taught us to always find joy and live to the max.
“Through the almost two years of battling cancer, we learned that channelling hope and joy were as powerful a medicine as any of the doctors could prescribe. Max taught us through his resiliency and easy-going nature to take one day at a time, and that you can find joy in almost any circumstance.
“I learned I am incredibly strong emotionally, and despite the trauma or fear I’m processing, Max is always going to get my best self, and what is necessary to do, will get done. On the flip side, I also learned to ask for help and let others help.
“Don’t succumb to the fear and sadness; find strength in the hope and own the fight. Trust the medical professionals, but always be curious, document everything and advocate for yourself or your loved ones. Accept help and take the moments to regain your strength; it’s a long fight. And most of all, find joy in every big and little moment there is.
“Like many people grieving, my greatest fear is that my son, Max, will be forgotten, so I continue to share his story and spread joy in his name through my Max Monday updates and through the foundation I started in his memory, The Maximilian Schuster Foundation. No matter what you are faced with, just take one day at a time and find some joy along the way.”