Belle

In 2015 Belle, at age 11, relapsed with an aggressive skull-based tumor that was pressing up against her brainstem. We weren’t given much hope for her survival. Belle was completely paralyzed on her left side, had lost the ability to swallow, could barely speak, and had experienced brain damage from hydrocephalus. We were told that we maybe had three weeks left with her and that we should focus our energy on saying our goodbyes.

 Matt and I refused to give up and began making calls to doctors around the country looking for anything we could do to try to save her life. We called our amazing radiation oncologist in Boston, and he told us he knew of only one other case like Belle’s. He told us to follow that child’s treatment plan, which consisted of five different chemotherapies, and then he gave us hope: this one other case he knew of was a girl who was the same age as Belle when she relapsed, and she was now in college.

 We immediately began chemotherapy, but something deep within me told me that we needed to do more to support our daughter through treatment. As parents, we focused our energy on making sure Belle was fed optimal nutrition, exercised when she was able, practiced healthy sleep habits, felt empowered to express herself when she needed to, and maintained a positive, mindful environment to heal in.

 Six months after we were told to say goodbye to our sweet girl, she was walking again and regaining her strength. One year after being told she wouldn’t survive, she was running around the hospital floor causing fun trouble, entertaining the nurses and doctors, and creating games and art that brought happiness to the other patients being treated at Diamond Children’s Hospital. Today, over five years later from thinking we were losing our baby to cancer, Belle is driving, getting straight A’s at school, thinking about which college she’s going to attend, and making plans on pursuing a career in pediatric oncology. She is our miracle baby.

Throughout treatment I knew that everything we were doing was helping Belle to thrive during cancer treatment, not just survive. A passion was born in me that I didn’t know existed; I knew I wanted to walk alongside newly diagnosed families and help them feel empowered to take an active role in their child’s treatment. I often felt alone as we tried to navigate our new life in the childhood cancer world, and I wanted to do everything I could to make sure that other families didn’t feel alone in their journeys.

 After Belle finished treatment I met the amazing Audra Wilford, mom to Max of the MaxLove Project. I told her of my newly found passion and that I wanted to join MaxLove Project in whatever way I could. Audra and Justin have accepted me with open arms and have given me the most amazing opportunity, to walk with newly diagnosed families who join our MaxLove Project community. I have the privilege of meeting newly diagnosed families, connecting them to our MaxLove Project community, and letting them know that they are not alone in their experience. Doing this work has been incredibly fulfilling and has given our experience with cancer a deep, powerful meaning and purpose. — Serene, Belle’s Momma