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.
