With their 4-year-old son's brain cancer temporarily in remission, Dr. Louis and Cindy Campbell searched for something to help him live longer and improve his quality of life. After applying for a clinical trial in Belgium for a new vaccine, the family readied their passports and tried to obtain tumor tissue from one of the many surgeries their son, Ty, underwent. They were shocked to find that none had been preserved.
"As parents, that was a big eye-opener," said Cindy Campbell. "At the various hospitals where Ty underwent surgery, it was not always protocol to save tumors for certain types of molecular analyses that might help doctors better understand a patient's cancer, and there was definitely no research initiative to preserve it."
Ty died in 2012. In his honor, his parents have gifted $130,000 to support a fellow at The Children's Brain Tumor Project, a specialized research lab in the Weill Cornell Brain and Spine Center that preserves and studies tissue derived from children with rare brain tumors. The fellow will assist Ty's physician, Dr. Jeffrey Greenfield, and the project's co-founder, Dr. Mark Souweidane, in sequencing brain cancers for their genomic data and finding new, less invasive ways to deliver drugs to tumor sites. Understanding a tumor's genetic sequence and how to effectively target a malignancy — an especially vexing problem in many brain cancers — could eventually allow physicians to tailor treatments to each patient, just as Ty's parents hoped to do abroad.
"The fellow will bridge the gap between the surgical service and the precision medicine teams, and keep the momentum towards making discoveries and translating them to medical treatments for children with rare tumors," said Dr. Greenfield, a pediatric neurosurgeon at Weill Cornell who treated Ty for his atypical teratoid/rhabdoid tumor, an especially rare and difficult-to- treat brain tumor. "We are pushing pediatric brain tumor research, systematically identifying targets in rare, difficult-to-access tumors by sequencing them and identifying a personalized treatment."
After performing 15 of Ty's 20 surgeries, Dr. Greenfield had become close to the Campbells. Cindy Campbell recalls how he shared their frustration over the lack of tissue preservation.
"We had a conversation with Dr. Greenfield and learned that it was always his dream to build an initiative to preserve and study tissue from rare tumors. As a family, we wanted to help that happen," she said. "We could tell Dr. Greenfield was in it for the long haul and really wanted to find a cure. We felt that a fellowship was the perfect way to donate something tangible: We can pay this individual's salary and have him help Dr. Greenfield with his important work."
When Dr. Greenfield first learned of the Ty Louis Campbell's Foundation's decision to donate, it was a poignant moment.
"Part of what we feel as physicians when a patient dies is failure," Dr. Greenfield said. "I was second-guessing whether we pushed too hard with Ty or made him suffer. But Lou, Ty's father, actually came up to me at a fundraiser and told me that the decision to do the last surgery was wonderful because it gave them a whole summer together. Ty ended up being cancer free for an entire year after that, so his family had more precious time with him. It is very meaningful that the family chose to donate, very humbling."