Jillian was born on March 23, 2012. She was a healthy baby and outside of the normal colds and ear infections, was never sick. In early April of 2016, we noticed that Jillian had some facial paralysis. After visiting urgent care, we were told it could be bells-palsy from a virus or possibly Lyme’s disease and would disappear on its own. A week after our urgent care visit, Jillian woke up and wasn’t her normal balanced self. She was falling off her chair, couldn’t get into her car seat and was complaining she was dizzy. With an instant pit in my stomach and mother’s intuition, I took her to pediatrician to see what was going on. The doctor said for us to go immediately to CHOP for a scan. Our biggest fear was revealed…they found a mass on her brain stem and couldn’t tell us anymore until the morning when they could perform an MRI to see what was happening in her brain.
The following day our lives changed forever. She underwent a 4 hour MRI to determine the extent of her disease. The team came back to report findings of numerous tumors in both her brain and spine. We were told that Jillian was very sick and that her disease was very advanced. We knew upfront that we were dealing with having to make decisions of quality over quantity for our daughter. She was diagnosed with pediatric brain cancer high risk stage IV medulloblastoma on April 13th. She immediately underwent a 9 hour surgery to remove fluid on the brain and the main brain stem tumor.
Her oncology team planned to give her body time to recover after surgery and start chemo treatments in a months time. Unfortunately her cancer had other plans. After only being home for two days, Jillian lost her hearing due to the tumors growing so quickly. The doctors made the quick decision to start chemo right away and not waste any time. We entered CHOP, which become our new home away from home for the next 6 months. Jillian’s extensive treatment required 6 rounds of high doses of chemo and 3 stem cell transplants. All required us to be inpatient and due to some complications we lived here. Our goal was always to be home in time for Christmas in case this would be her last. The doctors promised us they would do everything they could to make sure our wish was met.
She was an incredible and courageous fighter during her 6 months of being inpatient. She was fierce and Sassy which helped her in battle. That is how her name “Sassy Massey” came to be. She handled treatments like it was something that every child endures…never asking what happened or if she was sick. She would give the nurses a run for their money sometimes, adding a little extra sugar and spice. Always walking the hallways with a smile on her face. When I asked her why she thinks we have been at CHOP for so long, her response was “To play mommy. There is so much to do here and it’s fun!”
We left CHOP on October 12, 2016 and came home as a family of 5 to spend not only Christmas together but also Halloween and Thanksgiving. We were able to resume some normalcy as a family and be together again. She was on strict isolation measures for 6 months which meant no school, no public places, no visitors at our house, no germs essentially. She had no immune system from the 3 stem cell treatments and a common cold could kill her until her body was strong enough to bring back some immunity. Her restrictions were lifted in March 2017 and she couldn’t wait to go back to pre-school, gymnastics and be a normal 5 year old again. She had a scan in October before leaving the hospital and one in February that showed her disease was stable.
In May 2017, an MRI revealed the devastating news that her cancer had spread to a different part of her brain, and the only available options would buy minimal time yet compromise her being able to live outside the hospital walls. We had a hard decision to make as her parents. The only decision really was to place her on palliative care and let Jillian live the rest of her days with as much normalcy while checking off bucket items along the way.
Jillian’s nickname is “Sassy Massey.” She is funny; she laughs a lot; she loves angels, puppies and butterflies; she’s a fighter. And cancer has not changed that. Jillian is a five-year-old girl facing obstacles and experiences that I, as an adult, cannot wrap my head around, but she still smiles and laughs through life.
No parent should ever have to hear the words, there are no more treatment options. Every child should have treatment options to buy them more time and years of survival not just months. Jillian will unfortunately become a statistic of childhood cancer because we don't have treatment options available. We hope to create awareness that sparks movement that ultimately changes the current outcome for most children that are diagnosed with childhood cancer. While raising awareness, we want to spread miles of smiles to all these children in battle.