August 7, 2016 – November 6, 2022
“How do you tell a 5-year-old, who’s scared to death, everything is going to be okay — knowing it isn’t.”
That was the overwhelming thought Amanda Bell had as she left Johns Hopkins All Children’s Hospital after being told her son, Mason, had DIPG.
The day prior, February 15, 2022, her sweet, smart little boy had been happily playing in the school yard when he lost his balance and hit his head on a pole.
As Amanda recounts the details of that day, it sounds eerily similar to the day Chad Carr, the namesake of the ChadTough Defeat DIPG Foundation, was diagnosed in 2014. What would have seemed like an innocent fall to most people left Amanda (and in Chad’s case, his mom, Tammi) with an uneasy feeling that something wasn’t right.
Just like the day Chad was diagnosed, a visit to the ER turned into a day ridden with anxiety. A CT scan showed a mass on Mason’s brainstem. Hours later, an MRI confirmed the worst news imaginable.
“I was sitting in Mason’s room, alone, waiting for him to wake up,” remembers Amanda. “A doctor came in and told me my son has DIPG, radiation and clinical trials are the only treatment options, and there is no cure. She told me he had about 9 months to live.”
Mason began radiation on March 23, while his parents, Jason and Amanda, did their best to try to navigate next steps with few resources. They began to fundraise to try to pay for just some of the expenses that were building by the minute, all while trying to create happy moments and memories for Mason.
“He was supposed to grow up and learn how to work on cars or even be destined to build rockets and cool stuff that I would love to teach him,” said Jason. “But all we could do is fight for every moment we had left with him.”
As any parent who has faced a pediatric cancer diagnosis will tell you, the days that follow are filled with utter despair and a staggering sense of loneliness. It’s difficult for anyone to understand the unimaginable horror of losing a child to a disease for which there’s no cure. But then Jason and Amanda met Mark Fidel.
Less than an hour away from their hometown of New Port Richey, Florida, there was another little 5-year-old boy, also named Mason, who had been fighting DIPG since May of 2020. Sadly, Mason Fidel passed away from DIPG on August 4, 2022. Still, his dad, Mark Fidel, understood all too well what Jason and Amanda were going through and offered to listen and give any guidance he could by sharing what he had learned through his own son’s cancer journey.
It was through Mark that Jason and Amanda learned of a program called My Nurse Navigator, designed to help guide parents through the next steps of a DIPG diagnosis. Working with nurse Lauren, they looked for clinical trials that would be a good fit for Mason.
But sadly, Mason never got the chance. He passed away on Sunday, November 6th, just 8.5 months after his diagnosis.
“I’m so heart broken and I don’t know how we’re supposed to go on. Mason, your story will be heard forever. I love you sweet boy and always will.” — Amanda Bell, Mason’s mom