My son, Benjamin, was diagnosed with acute lymphoblastic leukemia in February 2019 at the age of four. Due to the unique nature of his presentation, he was placed in the VHR (very high risk) category and underwent three and a half years of treatment. My background is in theatre and education, but having just moved to New York, I was not working when Benjamin was diagnosed and was lucky enough to be able to devote 100% of my time to him. I spent his treatment years learning as much as I could about the disease and how I could best care for him. During that time, I also discovered watercolor, which quickly became my own form of therapy and eventually grew into one way that I share and teach others about the pediatric cancer experience.
Benjamin finished treatment in June 2022, and we were very lucky to have made it through without any major complications, however, we continue to face a variety of challenges beyond the physical impact of treatment. The mental and emotional repercussions have been tremendous, and we continue to work each day to give Benjamin the support that he needs.
In 2023, one of Benjamin's clinic nurses nominated him as a local Light The Night (LTN) Honored Hero. He was thrilled to fulfill this role and incredibly honored to serve as the National Honored Hero when asked to serve the following year. As his mother, I was often asked to appear and speak with him or sometimes on my own. Pediatric cancer treatment advocacy has become part of my life's work, and I don't think I can ever adequately express my gratitude to The Leukemia & Lymphoma Society (LLS) for providing both a model and a platform for telling our story. It is my hope that sharing our experience can serve to support and promote the very best care for families like ours.
Maggie
volunteer and caregiver
