Approximately 85 percent of children with cancer are cured. However, about 15 percent confront the sort of aggressive disease that cut short the life of Tyler Trent at the age of 20 on Jan. 1, 2019. “One hundred years down the line, maybe my legacy could have an impact”: so Tyler said about his efforts to raise awareness of the need for further research in pediatric oncology. Two years after his death, Tyler’s physicians continue to help incurable as well as cured children lead longer and better lives.
Back in 2014, when Tyler was 15, he was found to have a rare form of osteosarcoma in his arm and underwent treatments at Riley Hospital for Children in Indianapolis. But two years later, at the end of his senior year of high school, the disease reappeared in his pelvis. Despite another surgery as well as chemotherapy, he resolved to start as a freshman at Purdue University.
Bald and on crutches, he entered Purdue with a presidential scholarship and soon became a Boilermaker football superfan as he coped with life-threatening complications caused by yet another recurrence in his spine. He was at death’s door a few days before he attended the Purdue football game against Ohio State that he correctly predicted would result in an upset Boilermaker victory and his being named honorary team captain for a game played in one of the holiday bowls. At Purdue today, an undergraduate scholarship and a student gate at the football stadium memorialize his name.
One of Tyler’s doctors, Dr. Jamie Renbarger, currently heads Riley’s Center for Cancer and Blood Disorders and the Pediatric Precision Genomics Program, which serves children with aggressive solid tumors, high risk leukemias, and relapsed cancers, all of which are associated with poor outcomes. In consultation with a child’s oncologist and with a team of scientists, Dr. Renbarger uses genetic testing to identify DNA, RNA and proteins in cancer cells that can be targeted with different treatment options specific to the child’s needs.
According to Dr. Renbarger, “in about 85 to 90 percent of cases, we’ve found something clinically relevant about the patient or the tumor as a result of testing to help further guide therapy.” Dr. Renbarger is drawn to targeted therapies because they “may have fewer side effects than previous treatments, helping the child have a better quality of life and improving survival rates.”
Her optimism has been buoyed by the breakthrough of a colleague, Karen E. Pollok, who has used the cancer cells donated by Tyler Trent — they are called TT2 — to find a combination of drugs that substantially retards tumor growth. The donors of tumor samples are generally kept anonymous, but Tyler’s parents wanted to continue honoring his activism.
Dr. Pollok, who along with Dr. Renbarger visited Tyler two weeks before he died, was inspired by the meeting: “He was busily answering texts, tweets and managing Facebook to fulfill his last mission: to raise awareness for pediatric cancer research.” Today, Dr. Pollok adds, “our lab-quote when we discuss the research using Tyler’s cells is, ‘We will never give up!’” At the start of the coronavirus pandemic, her work on Tyler’s tumor models was deemed essential. She and colleagues published research in August in the journal Cancers that demonstrated that a combination of drugs could block the growth of these aggressive cancers.
Even after Tyler suffered seizures, clogged kidney tubes, emergency operations, and fevers that landed him in hospice, he gave interviews and published essays that testified to his remarkable ability to continue expressing himself in his unique way. Though Tyler never entered full adulthood, he managed to sustain “his passion to do whatever he could, even in the midst of this crazy, horrible journey that he was on,” Dr. Renbarger says.
Children with cancer, whether or not they are cured, need to find ways to retain a sense of themselves while dealing with the deleterious side effects of cytotoxic treatments. Dr. Renbarger therefore helped to create the Karuna Precision Wellness Center, where she works with individuals during and after cancer treatments to optimize their long-term quality of life through personalized integrative and wellness plans. The areas of focus include physical functioning, mental health (cognitive and emotional), and nutrition.
Kids especially face post-therapy hurdles, Dr. Renbarger believes, for they may experience alienation from their peers, anxiety, attention deficits and cognitive disorders related to memory, mental processing and executive functioning. Reintegration into school can be challenging. Additionally, since children who have received treatment “age at a faster rate,” they can be “more susceptible to diseases associated with aging like strokes, diabetes, joint and heart problems.” In an outpatient clinic, Dr. Renbarger assembles multidisciplinary teams — specialists in cardiology, adolescent medicine and fertility as well as educational and vocational coaches — to see pediatric patients into the best possible adulthood.
A similar determination led Tyler to donate a portion of the proceeds from his book, “The Upset: Life (Sports), Death … and the Legacy We Leave in the Middle,” toward cancer research. Along with his co-author, John Driver, and others, he composed it when his entire body had surrendered to paralysis except for his right arm. The voices of his parents, brothers and spiritual advisers supplement his account and form a sort of chorus. What emerges is a multifaceted portrait of a deeply religious young man fully convinced that “There is always an opportunity to help heal others’ hurts.”
“The Upset” underscores the conviction of Tyler’s parents that “when a child gets cancer, a family gets cancer” and extends his efforts to hasten that time when no family with cancer will be left behind.