Superheroes

In July of 2019, our daughter Maddie had just turned 5 years old. She was extremely active, climbing any tree she could find, playing hockey with her siblings, swimming at the community pool, riding her bike without training wheels, and going high speeds on her scooter up and down the big hills in our neighborhood. She had beautiful long blonde hair, a cute smile, delicate voice, kind mannerisms but fear of nothing.

In November of 2019 we started to notice changes in her behavior as well as vomiting after she would awake. What we believed was just a stomach bug, turned into our family’s worst nightmare. On November 26th, after numerous doctors’ visits, an MRI was ordered and what was found was a brain tumor. She went right into surgery the following day and shortly after was diagnosed with Medulloblastoma, an aggressive form of brain cancer

The days and weeks that followed were horrific. After brain surgery, Maddie suffered from a collection of symptoms called posterior fossa syndrome. In addition to cranial nerve palsies (one sided facial paralysis and motor problems with her eye), Maddie suffered from weakness, balance issues, emotional lability, and changes in sensation. It took her weeks to be able to learn to walk, talk and feed herself again. After 3+ weeks in the hospital and inpatient rehab she was able to come home. A week later, on Christmas Eve, she had surgery to have a port inserted. Then on December 26th, 2019, Maddie began 30 rounds of proton radiation at Rainbow Babies and Children’s Hospital in Cleveland. During radiation treatment she suffered from hydrocephalus, which required the placement of a shunt and a pause in her radiation treatment. Additional complications required 2 more brain surgeries and a placement of a gtube. Finally, on February 14th, Maddie was able to leave the hospital.

In March, Maddie began a grueling chemotherapy regiment at Children's Hospital of Pittsburgh. She had four separate rounds of in-patient chemotherapy, one month apart. During her first inpatient stay, the world shut down due to COVID. Navigating the unknown world with a child who was immunocompromised and isolated was challenging, to say the least. As parents, we took our cues from Maddie and she showed her resilience, by finding the fun and making a lot of slime during every hospital visit, port access, blood transfusion, and chemo infusions.

Maddie was able to complete her last round of chemo in June and her scan in July showed no evidence of disease. Unfortunately, at her end of treatment scan, we discovered that Maddie had a large brain bleed. Maddie was quickly whisked into the operating room where she endured her 5th brain surgery in order to evacuate the bleed. Maddie has been in remission since July of 2020, but has had to battle numerous side effects including right sided facial paralysis, hearing loss, vision loss, extreme anxiety, deficiencies in balance and motor skills, learning disabilities and other neurological challenges.

Currently, Maddie is a 3rd grader at Connoquenessing Valley Elementary School in Zelienople. Maddie still loves to climb, swim, do art projects, and ride her bike. She has also taken an interest in dance and playing soccer. Maddie always manages to have a smile on her face and will brighten the day of anyone who has the pleasure of crossing her path. She is an inspiration and we are so incredibly grateful that we get the opportunity to watch her grow. Maddie wouldn’t be here today without the incredible doctors, nurses, medical assistants, PT/OT teams at Children’s Hospital of Pittsburgh and Rainbow Babies and Childrens. Thank you to Kids on Carousels for allowing us to share Maddie’s story and for raising awareness for childhood cancer.