30 DAYS/30 STORIES® 2023
After being members of PCFLV for almost 3 years, we have seen that these kids have more resilience and courage than any child should have to. They go through more character-building experiences than most adults ever do. It is remarkable to witness their fortitude as we go through hell watching them deal with this diagnosis. Nobody deserves cancer. Pediatric cancer is a biological injustice. However, our biggest struggles become our greatest assets as we go through it, lean on the support system around us, grieve when we must grieve and rejoice when victories occur.
Isabelle, our beautiful and joyful 7-year-old daughter, was diagnosed with a craniopharyngioma in December of 2020, at the height of the COVID pandemic. Her symptoms were subtle and when our pediatrician told us to get a brain MRI, we were shocked. Once the scan was read at LVHN, we were swiftly shuttled to Children’s Hospital of Philadelphia and told that our daughter had an inoperable brain tumor with a cystic mass measuring 9.7cm across, sitting above her pituitary gland.
This began our journey. Year 1 saw 9 brain surgeries, multiple MRIs, CT scans, hospital visits and an Ommaya reservoir implanted to drain her cysts. At the end of 2021 we had a stable scan and things seemed to be moving in a good direction. In February 2022, the quarterly scan revealed that the tumor was growing, and treatment was imminent. Surgery was not an option with the tumor’s proximity to very sensitive brain systems, leaving us with the best option being proton beam radiation therapy. She underwent 30 sessions of radiation therapy treatment at Penn. Although it was a terrifying experience, there was a sense of peace around her throughout our time there. The way the radiation angels (what we called the nurses) took care of her ultimately made it a strangely positive experience. The 6 months following the radiation were very challenging as the cysts continued to grow, and her constant fatigue kept her from having many normal childhood experiences.
Finally, in February of 2023, her MRI showed that the cysts had begun to subside, and the tumor was dying down. The radiation was working. Our May scan showed that cysts had significantly shrunk, and the tumor had been continuing to shrink as well. By this time, her fatigue had mostly lifted, headaches had subsided, and JOY had become her primary emotion. For the first time in our daughter's life, she gets to experience childhood like other kids do and it is wonderful!
This is the joyous part of the journey. It is as if we get to breathe again after holding our breath for so long. It is as if our child that was asleep is now awake. It is as if the life we had to put on hold for our family is being realized. The gratitude that we feel is indescribable. The range of emotions that come from this experience are still being revealed. Even after some good news, we are still on guard all the time and looking for symptoms that may take us to CHOP. Our life has forever changed and managing this tumor will always be a part of her life. However, for now, we are happy to share the hope and gratitude that has come at this part of Bellsie’s story.
Written by Bellsie’s dad, Rob
Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip