Happy, joyous and free are great words to describe how Isabelle is living her life today.  3 years ago, we could not say the same thing.

In May and June of 2022, our daughter, who was 6 at the time, was undergoing radiation treatment at Penn for a rare, inoperable brain tumor called a craniopharyngioma, which sits just above her pituitary gland and optic chiasm.  Her oncology and neurosurgery teams at CHOP determined that the best way to treat the tumor was to radiate.  She had already undergone 10 brain surgeries, since her diagnosis on December 2, 2020, to drain the massive fluid filled cysts created by the tumor. Now, the solid mass tumor growth had to be stopped.

Her final day of radiation was the Monday of Camp Smile at PCFLV.  She attended the rest of the week at camp.  She did crafts, she played flag football, she did yoga, she performed at parent’s day, and she made people smile.  Following camp, the next 6 months of post radiation fatigue kept her unengaged from life. Even our trip to Disney in November mostly consisted of staying indoors at the resort where it was calm and quiet. During her initial inpatient ICU experience, she started sorting beads as a coping activity. Bead sorting, with specific rules and intricacies, became a calming retreat throughout her treatment. It continues to be her outlet as stress and challenges confront her. Finally, she emerged from her shell in February of 2023 and has gradually become her true self.  Bellsie is so many things other than a child with a brain tumor and all of them are beautiful.

People talk about how strong these kids are.  I hear people refer to these children as their heroes. Some say how amazingly resilient they are.  All true. All incredibly true. They should not have to be these things. They just want to be kids. Yet all the treatments seem to create an undeniable desire to live life and push through and overcome this affliction.  That is what I have witnessed through all of my experience at PCFLV.  Bellsie’s favorite week of the summer is Camp Smile and as she gets older, she is learning that there is a special bond between the kids she attends this week-long summer day camp with.  She makes connections without even realizing the shared struggle that other children in PCFLV have in common.  Michelle, the Executive Director of PCFLV and cancer mom, talks about the collateral beauty that families of PCFLV experience, as we find grace and joy as part of our journey, right alongside the unbearable pain, fear and despair.  It becomes part of our lives and in our family, we witness it every day.  Thank you PCFLV for helping us learn to navigate this lifestyle and to find goodness amidst the grief.

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