It has been almost 4 years since our journey with PCFLV began. In the fall of 2020, our 4-year-old daughter Isabelle (Bellsie) had been exhibiting some unusual behavior. She was having extreme separation anxiety and disturbing emotional tantrums and night terrors. We noticed she was never running, unlike other kids her age. She began having great difficulty with balance and was walking with an unusual gait.

Our concerns led us to our pediatrician’s office, who, shockingly, directed us to go to the ER immediately for a brain MRI. On December 2, 2020, the results of a brain MRI showed that Isabelle had a 9.7cm mass above her pituitary gland that was later diagnosed to be the cystic portion of a brain tumor called a craniopharyngioma. Lehigh Valley Reilly Children’s Hospital immediately arranged transport to Children’s Hospital of Philadelphia, which would be our home for the next three weeks. We were told to prepare for a marathon because this rare tumor was going to be unpredictable and challenging to treat. They were right. It took the wonderful teams of doctors and nurses at CHOP eleven surgeries to drain the cyst and then 30 rounds of proton beam radiation therapy at Penn to kill the tumor throughout 2021 and 2022. All this treatment was physically, emotionally and mentally exhausting for Bellsie, as well as us. As her parents, we did the best we could to comfort her and help her through the trauma of her sickness.

Fortunately, we were plugged in with PCFLV from the start and had a well-established support network that carried us when we needed them. Navigating the messiness of a pediatric brain tumor with all its fears, fatigue, anxiety, confusion and anger is too much to handle alone. Tracy, Michelle, Rhonda and Kris know that support is crucial during all stages of a childhood diagnosis like this. They are doing vital work through this foundation that changes lives forever. We never once felt alone in our journey and a lot of that is from the programs, the outreach and the friendships that these women provided and continue to give our family and others like ours. We found that the parent support group meetings were an absolute Godsend for us to make sense of this new and scary lifestyle we were thrust into.

Bellsie is not facing the same challenges today that she did in her first two years of her diagnosis. Her tumor treatment worked better than expected, and her cysts are no longer causing problems. She will live with the effects and medical maintenance of the tumor and radiation for the rest of her life, but her current state is simply miraculous. She is a happy, joyful and overall healthy 3rd grader who absolutely loves Camp Smile and gets the biggest smile whenever she hears we are going to a PCFLV function.

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