A Sister’s Mission Brings New Cancer Treatment to Riley
It all started when Molly Osmon, then 11, took a hand-drawn flier and knocked on her principal’s door. She asked if her school, the 215-student Springville Elementary outside Bedford, Ind., would host a small fundraiser for Riley Hospital for Children at Indiana University Health.
What the event became, though, complete with a carnival, food trucks and silent auction, would reverberate throughout the Lawrence County community and beyond, setting a single-event Riley fundraising record for Indiana elementary schools and helping bring a state-of-the-art cancer treatment to Indianapolis.
SISTER ON A MISSION
Molly’s motivation was personal. Her younger brother, Riley, was diagnosed with pre-B acute lymphoblastic leukemia in 2013, just before his second birthday. Molly was 6 at the time, and grew up as her brother underwent chemotherapy, had multiple surgeries and spent more than 300 days at Riley Hospital.
Riley’s type of leukemia was considered very treatable, and his first year-and-a-half of chemo went smoothly. But in 2016, he relapsed, and then developed a near-fatal lung infection. In March 2017, Riley relapsed for a second time.
“We’d be researching the newest treatment options, and we found CAR-T cell therapy, but it was only available in clinical trials when he had his first relapse, and he didn’t qualify,” recalls Riley’s dad Trent Osmon. “By the time he relapsed the second time, it was commercially available, and I said, ‘We’re doing this.’”
CAR-T THERAPY: “NINJA CELLS” FIGHTING CANCER
CAR-T is short for chimeric antigen receptor T-cell therapy. The newly-approved, game-changing treatment that modifies patients’ immune T-cells and turns them into “ninja cells” designed to seek and destroy the cells where the leukemia lives. Trials found that more than 80 percent of patients went into remission within a month of beginning treatment.
The only problem was, because the treatment was so new, it wasn’t yet available locally. The Riley Hospital team helped the Osmon family work with an Ohio hospital to arrange CAR-T treatment. That sparked Molly’s big fundraising idea: could she raise enough money to bring CAR-T to Riley Hospital? “I just wanted to help out,” the now-sixth-grader says. “I didn’t want other kids to have to travel out of state to get this treatment.”
With help from her family, school staff and the Riley Children’s Foundation school fundraising program, Kids Caring & Sharing, Molly organized the Be Brave and Beat Cancer event. The community turned out in a big way.
“In Springville, we still have that small-town feel. Everybody knows the Osmons, and we saw one of our own needed help,” says Springville Elementary Principal John Hudson. “I figured, even if we raise only $500 or $5,000, it was still important to support this family.”
The event shattered expectations, raising a total of $22,000. It was the largest single-event fundraiser by an Indiana elementary school since the Kids Caring &and Sharing program began in 1985.
During the 2017-2018 school year, 540 schools throughout Indiana raised $2.6 million through the Kids Caring & Sharing program. Director Susan Miles describes it as a “giving for giving’s sake” program―there are no prizes for donating; schools simply get a wood plaque to mark their participation. “What I find so interesting is that Springville Elementary had never raised money for Riley before, but when a fifth-grader came to them with the idea, they realized that this was a way that she was processing what was happening with her family,” Miles says.
ONE DONATION’S GAME-CHANGING IMPACT
Meanwhile, Jodi Skiles, M.D., a Riley Pediatric Hematologist/Oncologist who serves as Director of Pediatric Stem Cell Transplantation, had already been working with her team to bring CAR-T to Riley Hospital. They needed just $20,000 to move forward.
“The reality is that we needed funding for more personnel to deal with all the extra paperwork and insurance authorization that comes with CAR-T patients,” Skiles said. “The Osmons’ funding was absolutely paramount in Riley Hospital being able to offer this therapy so quickly to our patients.”
A NEW NORMAL: LIFE WITHOUT CHEMO
Today, Riley is 7 years old and in first grade. Recent blood work detected a few B cells, where the leukemia lives in his body. It doesn’t necessarily mean his cancer is back, but his doctors say he needs more monitoring and possibly another CAR-T infusion.
“He’s been on chemo for five years, so even when he felt good, he was still on chemo,” Riley’s mom Karrie Osmon says. “Now we’re getting to find out who Riley is when he’s not on chemo. His energy levels are good, and he seems more like a normal first-grader.”
Click here to learn more about our Kids Caring & Sharing program.
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