Precision Medicine

In late 2021, eight-year-old Rowan arrived at the emergency room weakened by weeks of unexplained illness. Due to Covid-related restrictions, his father and brother waited at home while his mother sat with him, unaware that their lives would change forever. After testing, doctors found a golf ball-sized tumor in Rowan’s cerebellum, blocking the natural flow of spinal fluid through his brain.

What followed was a whirlwind of surgeries, treatments, and countless hours in hospital rooms. Through six weeks of daily proton radiation therapy and nine cycles of chemotherapy, Rowan powered through every side effect. Even during his first chemo infusion, he sat calmly eating Doritos as if it were just another ordinary day. His younger brother stood by his side, ready to play whenever Rowan had the energy. They often played with Legos, which helped rebuild his fine motor skills.

Between treatments, Rowan looked for every opportunity for joy. He conquered a rock-climbing wall, soared through an aerial obstacle course, and proved his tenacity by completing the third grade on time despite spending much of the year in treatment. When his port was finally removed in November 2022, his family felt like a new chapter was beginning.

But in October 2023, a second tumor appeared – a high-grade glioma caused by his previous radiation treatment. This time, the treatment path was guided by genetic sequencing thanks to CURE’s investment in the Precision Medicine Program. Through this testing, doctors discovered that Rowan had Li Fraumeni Syndrome (LFS). Most people have a pair of proteins that keep cells from growing abnormally and becoming cancerous. Because of LFS, Rowan’s body doesn’t make enough of these proteins, and cells can divide uncontrolled and form tumors.

Without the genetic sequencing, Rowan would have undergone rounds of harsh infusion chemotherapy. Instead, armed with the knowledge of his LFS, doctors opted for a more targeted approach with oral chemotherapy that reduced his risk for additional tumors. The genetic testing also revealed that Rowan had inherited LFS from his mother, Charlan, leading to important, life-long, monitoring protocols for both of them.

Rowan & Jacob Today

Rowan is eleven years old and writing a new chapter of his story. He is in middle school, plays the trombone, and continues to choose joy every day. Regular MRIs every three months keep careful watch, allowing doctors to catch and treat any potential issues in the early, more treatable phase. Made possible by genetic sequencing, this proactive approach gives Rowan and his family the power of knowledge and early intervention.

“We won’t put their heads in the sand but rather face each day armed with understanding and hope.” his mother, Charlan, said. “For Rowan’s younger brother Jacob, genetic testing brought relief because it confirmed he doesn’t carry the LFS gene.”

Rowan’s story illustrates the power of precision medicine and genetic sequencing in childhood cancer care. It’s about a boy who loves his family and friends, being in school, and trying many kinds of games and activities – and how scientific advancement helps him continue doing all these things. Through genetic testing and a determination to find joy in every moment, Rowan and his family continue their journey – not just surviving but truly living.

Easton has been fighting cancer for most of his twelve years. When he was 21 months old, he was constantly sick. His pediatrician noticed that his sickness was abnormal – he vomited more frequently in the mornings and while sitting in his car seat. A scan revealed a large tumor on Easton’s brain stem near the area that controls swallowing and nausea.

“The fact that Easton would get sick after being in his car seat made our pediatrician suspicious,” recalled his mother, Jill. “If the car seat hadn’t put pressure on the tumor, it might have taken longer to find.”

Easton had surgery to remove as much of the tumor as possible, followed by eight weeks of proton radiation in Jacksonville, Florida. His family was thrilled when a follow-up scan showed no presence of the tumor.

“We thought it was over,” said Jill. “We were told that if we had five years of clear scans, we wouldn’t have to worry about it again. Easton had four years of clear scans. But the cancer came back during the fifth year.”

Easton started treatment all over again in 2017 and experienced horrible side effects from the chemotherapy and radiation. Because the tumor grows around the area of the brain that controls swallowing, he has always had challenges eating. The awful mouth sores from his chemo caused him to be on a mostly liquid diet, and he had trouble maintaining weight.

In May 2022, Easton underwent a very risky surgery to try and remove the last part of the tumor. The surgery was unsuccessful. As he started recovering, Easton fell out of bed in the middle of the night. His parents rushed him to the emergency room, where doctors found that Easton’s brain was having a reaction to the glue that was used on his skull after surgery. He would need another risky brain surgery.

“This time, I felt like it was getting away from us and it was the beginning of the end,” said Jill. “He had been on some form of treatment for five years, and the tumor always found its way around it.”

But thanks to funding from CURE Childhood Cancer, Easton’s doctors have a new tool in their toolbox. CURE’s funds would pay for Easton’s tumor to be genetically mapped to see if his cancer involved any genetic mutations that could be targeted.

The genetic mapping revealed that a protein was feeding Easton’s tumor, causing it to grow. Doctors found an open clinical trial using a chemotherapy to inhibit this specific protein to prevent further tumor growth. Easton was immediately enrolled in the trial, and the results have been astounding. After four months, a scan showed that the inside of Easton’s tumor appeared to be dying. Three months later, the tumor is much smaller and is collapsing in on itself.

“The best news is that the tumor is dying. But also, he has no side effects. He can do the things a twelve-year-old should do while on this treatment,” shared Jill. “We’re still early in the process, but it has saved his life – at least at this point. I finally have hope for the first time in years. We are so encouraged and thankful to his doctors and to CURE for investing in precision medicine.”