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When Tyler Trent was 14, he was diagnosed with bone cancer. After 10 months of treatment, he was relieved when doctors said he was cancer-free. Grateful, Trent resumed his life as a normal teenager.
In January 2017, months away from high school graduation, he pulled his groin muscle at the beach. When it never improved, doctors found that his cancer had returned, and its recurrence meant it was unlikely Trent would survive.
“We fell apart. There almost aren’t words,” his mom, Kelly Trent, told TODAY. “There was a lot of despair and disbelief. A lot of what ifs.”
Trent and his family were overwhelmed. But the young man wanted to treat his second experience with the disease differently than the first.
“All I was focused on was leaving a legacy that would impact the future generation. Whether it would be a legacy that would help find a cure or a legacy to raise money to find a cure,” he told TODAY.
That’s why Trent, now 20, immediately agreed when doctors at Riley Hospital for Children at Indiana University Health, in Indianapolis, asked if he was willing to donate blood and tumor tissue. His donation would be used to better understand the type of bone cancer he had, osteosarcoma.
“There was no doubt in my mind," said Trent. "It was an automatic yes.”
From frisbee accident to creating a legacy
It started when Trent was 14 and playing Ultimate Frisbee at a birthday party. He complained that his shoulder hurt. It gradually improved like any other sports injury, allowing him to go to camp and enjoy his summer. But months later, the pain resumed.
This time his parents took him to an urgent care clinic for an X-ray.
During the imaging, Trent overheard the tech mutter, “Well this is not good,” and the teen started worrying. A few minutes later the doctor came in and said, “This looks like a tumor.”
A few weeks after visiting the urgent care, Trent started chemotherapy to shrink the tumor before surgery to remove it. But that little break between the first X-ray to chemotherapy was enough to cause the cancer to spread.
“It was so aggressive that even in that short time from the original X-ray to the follow-up … It had grown into his shoulder,” his mom explained.
After about 10 months of treatment, including surgery to replace his shoulder and humerus bone, Trent was cancer-free. Then in early 2017, the family learned Trent’s new pain wasn’t a pulled muscle. It was osteosarcoma again. This time in his hip.
“It is absolutely a nightmare,” Tony Trent, Tyler's dad, told TODAY. “I wouldn’t wish cancer on any family.”
At that time, Dr. Jamie Renbarger, a pediatric oncologist, was starting a tumor biobank at Riley Children’s Hospital, and wondered if Trent would donate his tumor to be one of the first living donors.
“There was never a question,” Renbarger told TODAY. “It was a no-brainer. They knew they had to do it. It was this internal drive from Tyler. He was very committed.”
Naming the cells
At the time, doctors removed part of the tumor for biopsy and banked some to be used in research to better understand osteosarcoma. Trent asked so many questions about his tumor and whether they were close to publishing any papers that the doctors felt like he was almost a partner.
So they gave him a role: naming the cells.
“He has been so curious about the process so we had conversations about him being able to name the cell lines,” explained Karen Pollok, researcher at the Herman B Wells Center for Pediatric Research at Riley Children’s Health.
Trent named it TT1, aka Tyler Trent 1. Tyler said he came up with the name because his dad Tony’s nickname was T-squared in college.
'It is devastating.'
After what seemed like successful treatment in 2017, doctors believed they had eliminated the osteosarcoma. Then before he started his freshman year at Purdue, doctors found cancer again.
“It is devastating,” his dad said. “I searched the world for something that might be out there that might be a cure.”
Right now, Trent receives hospice care. He donated another sample to Renbarger, TT2, and recently met with the researchers to hear how his cell line is being used in their studies.
“That is what has kept me going and essentially kept me alive: research and genomics. Without that, I wouldn’t be here,” he said.
Even though Trent's health varies daily, he still works to raise money for pediatric cancer research. He raised $100,001 at the Purdue Dance Marathon, the largest amount raised by one person. And he keeps increasing awareness of pediatric cancers.
His work helped him win the Disney Spirit Award during the College Football Awards, and the Sagamore of the Wabash award from Indiana Governor Eric Holcomb. Riley Hospital also created the Tyler Trent Cancer Research Endowment. The researchers are not surprised.
"He has been an amazing partner," Renbarger said.
The future may be uncertain, but Trent stays strong, thanks to loads of support.
“It would be impossible for me without my family and without my faith in Jesus Christ,” he said.