Mason was six that day in January. Telling a six-year-old he has cancer, what cancer is and what could possibly happen to him was an out of body experience for me. He’s six. How is this possible? He is only six. Our world spiraled out of control.
I will never forget that moment, coming out of the MRI suite when the technician directed me toward a room where Shelly was sitting, waiting for me to return. Shelly had already been devastated by the images and what the radiologist had said. The images revealed a massive brain tumour, which we later confirmed as a group 3 metastatic medulloblastoma – one of the worst and most aggressive forms of childhood brain cancer.
We learned to live in the moment in a way that only something like this can teach. Joy could be found in heartache and hope was hidden in the darkness. The support around us bolstered us and helped us crawl through the unknown life-territory we had been forced to travel.
It all started with extreme pain in my back and knees. What I thought was just an injury from playing volleyball turned out to be a tumour in my abdomen. The tumour was massive. It was 20 by 10 cm—about the size of a cantaloupe. I was 15 and had to quickly come to terms with the fact that, not only was I dealing with cancer; I was carrying around a 15-pound tumour in my abdomen that I hadn’t even noticed growing.
My work in this area has marked me in so many ways, or more correctly stated, the kids and families have marked me forever. They continue to speak to me as I pursue research in trying to understand and make living better for children and families experiencing cancer.
After two wonderful years in remission, our worst fear came true. On December 1, 2012, very early in the morning, Erik climbed into our bed, complaining that he wasn’t feeling well. After a short time, we noticed that he was rapidly losing control over his balance and neurological functions. He lost his ability to speak and then could not stand. The entire left side of his body was effectively paralyzed.