Ben Robinette: Thriving After Pediatric Osteosarcoma
How research paved a path for Ben to be where he is today, and a passion for helping others.
Ben Robinette, a sophomore at the University of Notre Dame, had an incredible summer. He got to experience a new culture, see new places and continue his education while studying abroad in Italy. Something that a few years prior would have felt improbable.
“I shouldn’t really have a leg at this point, but through this research, I’m able to walk and run and row my way through college,” Ben said. “I was walking 20,000 steps a day, something that I couldn’t even have imagined while I was in the hospital.”
Diagnosis
A native of Omaha, Neb., Ben played football and basketball in high school. During basketball season in February 2021, he noticed a pain in his leg while lifting weights. The pain continued, leading to appointments to determine if it was a sports injury. But, at age 15, Ben was diagnosed with stage three osteosarcoma.
Ben was admitted to the hospital and quickly started chemotherapy. The side effects were tough – very sick, loss of appetite, weight loss, hair loss, and the worst aspects in Ben’s opinion, a brain fog in which “everything kind of feels like a daze.”
He spent 150 days in the hospital, passing the time by playing guitar and playing video games with friends. He wasn’t able to go to school and friends were not allowed to visit due to COVID-19 regulations, so video games were one of the best social outlets.
After his lengthy stay, Ben returned home to be welcomed by a parade outside of his house with nearly his entire school class holding up signs.
“I got home, said hi to everyone, and passed out on the couch instantly. I didn’t really see them for too long, but it was a really nice gesture.”
Evidence of Cancer Research
Ben credits cancer research for developing the treatment plan he was on.
“Osteosarcoma is one of those cancers that has been heavily researched. The method they use is pretty old because it’s one that works really well. It’s evidence of past research working really well.”
Advancements in orthopedic medicine have also made it possible for him to now have full function in his leg. After multiple failed cadaver femurs, new research introduced another option. Ben’s doctors 3D printed a femur that matched his original bone then casted it with titanium.
“That titanium mold was not a possibility when I first got diagnosed. It wasn’t for another two years that they wanted to use that. It was semi-experimental surgery, but it had gotten more renowned by the time I got it.”
“So far, that hasn’t set me back at all. My leg functions great. There’s just a scar there that represents it being there.”
Doing What He Loves
Ben hasn’t let his journey with cancer slow him down. After being cooped up in a hospital for 150 days during treatment and going through multiple surgeries, he is enjoying all that life has to offer. He currently attends the University of Notre Dame and has been able to return to his love of sports – joining the Fighting Irish Rowing Team.
“Nowadays, I’ve made it to college studying aerospace engineering and am on the rowing team where I have an opportunity to push myself physically and go back to sports that I loved in high school.”
In addition to starting the next chapter of his life, Ben also has enjoyed traveling and seeing the world. Since his cancer journey, he’s been to Hawaii, Mexico, Paris and Italy. Each trip celebrates where he is today and how far he’s come in the last few years.
An Urge to Help Others
While cancer research has paved the way for many osteosarcoma patients, there is still much work to be done. Being a part of the childhood cancer community, Ben hears stories of others who are going through what he did.
“I really had been praying for a moment to give back to what I’ve gone though,” Ben said. “I was really haunted every day by the fact that children were still going through what I did.”
One particular story comes to mind – his friend, also named Ben, who was just a couple of years younger than him. He was diagnosed with stage four brain cancer and fought it for eight years before he passed away.
“I saw a strength in him that I didn’t have. It’s insane that kids have to go through that and build strength so early.”
Through watching the experience of a friend, Ben Robinette knew he wanted to give back.
“It really breaks my heart. But, it’s awesome that I’m able to try to use my story to help change the way that cancer is. I remember genuinely weeping at the idea of children going through what I did.”
The V Foundation for Cancer Research
While at a fundraiser in Kansas, Ben was connected to legendary ESPN commentator and V Foundation Board Member Dick Vitale. Dick was inspired by Ben’s story and shared about his work with the V Foundation. He invited him to the annual Dick Vitale Gala as a part of his All-Courageous Kid team, a group of young cancer fighters and thrivers.
Through the Dick Vitale Gala and the Dick Vitale Pediatric Cancer Research Fund at the V Foundation, Dick has been a champion for progress. The Fund has raised over $100 million for childhood cancer research, and 100% of direct donations go directly to research.
Now, Ben hopes that sharing his story will make an impact – to encourage kids who are going through and to fundraise for even more childhood cancer research.
“I’ve seen Jim’s speech,” Ben said. “What he stood for, what he wanted, what he believed the V Foundation should be, I completely back that. I’m excited to see where it goes and how much money we can raise.”
