When she was 12 years old, Shannon O'Hara told Rochester's KTTC-TV, "My life is going to mean something to someone, somewhere." That was 2011, and it was a profound prediction from a young girl who'd been diagnosed with a rare, inoperable tumor called a brain stem glioma. Just nine months after she was diagnosed, Shannon passed away. She knew what lay ahead when she made her prediction. "There is no cure for Shannon's type of tumor and very little effective treatment," Shannon's mother, Jen O'Hara, recently told Rochester's Fox47.
But now, thanks to Shannon's determination to make a difference, there is hope. That's because learning about "Shannon's courage and Shannon's story" inspired Mayo Clinic cancer researcher Richard Vile, Ph.D., to alter the focus of his work. As Dr. Vile recently told Mayo Clinic Radio, his son played tennis with Shannon, and because of that connection, he followed her story and attended her funeral. "There's nothing that will focus your mind more than attending the funeral of a young child," Dr. Vile told Fox47. He had worked for many years on developing immunotherapy treatment for melanoma. Now, he's taking what he's learned about using the body's own immune system to fight one deadly cancer and applying it to another. And he's doing it by studying Shannon's cells.
"She wanted her tumor donated," Shannon's mom says. "She made it very clear to us that she wanted to help even after she was gone," Dr. Vile is using samples of Shannon's tumor cells to create what he calls "a library" of "all the proteins that have been expressed in the tumor cells." He's studying them to determine which stimulate a response, with the ultimate goal of creating a vaccine that would serve as a "wake-up call for the immune system." Fox47 reports that Dr. Vile is making progress and "hopes to have a human test trial ready within the next five years." If that trial leads to a treatment, "it will be from her, from Shannon," says Dr. Vile. "That's probably more than most of us can hope for in our lifetime," he says, noting that "she will live on, and if we can be successful with this, she will have made a profound difference."
That's a difference that gives a measure of comfort to Shannon's family. "For us, it's incredibly rewarding to know that exactly what Shannon wanted is happening," says Jen. "To think that she may matter to a larger audience and to kids suffering from the same kind of tumor someday is very exciting, and we hope we can see that in our lifetime."
You can learn more about Shannon's story on the O'Hara family's blog, where you'll also find links to the Shannon O'Hara Foundation and Determined to Matter, a book Jen wrote about the family's experience. Then share your comments below and use the tools above to share this story with others.