30 DAYS/30 STORIES® 2022
Throughout the fall of 2020, our 4-year-old daughter, Isabelle (Bellsie for short), was exhibiting some extreme emotional behaviors, that we were attributing to being stuck home during COVID. She was also experiencing balance issues and an unusual gait, which we were growing more concerned about through November. We decided to call her pediatrician on November 29th and got an appointment the next day. After describing our observations, our doctor instructed us to immediately go to the ER to get a brain MRI. Two days later, Bellsie’s first scan at LVHN showed a 9.7cm mass in her head and we were given immediate transport to Children’s Hospital of Philadelphia (CHOP).
On December 2, 2020, Bellsie was diagnosed with a craniopharyngioma. The neuro-oncology team at CHOP described it as a rare inoperable brain tumor that sits above the pituitary gland and optic chiasm. The nature of this tumor is that is creates cyst fluid, which was the big mass we saw on the scan. Their plan was to drain the cyst through stent surgery before addressing the tumor.
After 3 brain surgeries, an EVD tube and 3 ½ weeks in the PICU, Isabelle was sent home on Christmas Eve. Over the next 5 months she underwent 6 more brain surgeries to drain as much of the cyst as possible, the last (May) of which was to install an Ommaya Reservoir to be able to access the posterior cyst as fluid accumulated. We had gotten a break from monthly surgeries and went into monitoring of the tumor through quarterly MRIs. Bellsie’s November scan showed that the tumor and cyst were stable had not grown at all. We even believed that maybe it would just stay that way. We let our guard down and life starting feeling a little normal again. She was doing great in kindergarten and we were moving forward.
We were blindsided by her February scan that showed some anterior cystic growth as well as growth of the tumor. Before this time, we had been told and believed that we would not need to treat the tumor for years to come, possibly even until puberty. The nature of this tumor is that as it grows it will interfere with the pituitary function, which up until now, was working normal. We were shocked when our neuro-oncologist said that the time had come to treat the tumor. Within days, we had a meeting with the Chief of Radiation-Oncology at Penn to learn about Proton Radiation Therapy. Radiation had less risk than surgery, but the tumor would still be in there, as well as the cyst pockets that had been forming.
We began a 30-day radiation treatment on May 12. For the next 6 ½ weeks we drove to Penn daily to have her put under anesthesia and administer proton beam radiation. It was a long and difficult process but she had the most amazing attitude and charmed all of the nurses. She eventually had her final treatment on June 27, just in time to attend the remainder of the week at PCFLV’s Camp Smile.
Her first day at Camp Smile was fantastic for her. She ran around, played flag football and did karate. She won an award for “Best Smile and Laugh.” As time goes on, her energy keeps getting better and her attitude is unbelievably positive. We now will go back into quarterly monitoring as the effects of the radiation continue to unfold. Her future will always be uncertain, but we have been carried through this ordeal by a tremendously caring and generous support network. PCFLV has been with us all the way through. We will try, but will never be able to fully give back what has been given to us and continues to come through this foundation.
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