Kaley Ihlenfeldt: Defying the Odds Through a Clinical Trial

At 14, Kaley Ihlenfeldt radiates confidence and joy. A high school freshman, she loves theater, drawing, and spending time with her younger sister, Aubrey. To anyone who meets her, Kaley looks like any other teenager—full of energy with countless plans for the future. But 5 years ago, her parents were told she wouldn’t live long enough to reach high school.

In May 2020, at 8 years old, Kaley began complaining of persistent headaches and nausea. After a visit to her pediatrician, COVID was ruled out and her parents, Jenny and Chris, assumed it was the flu. After a week without improvement, they rushed her to the emergency room where an MRI revealed a mass on her brain. Kaley then received a CT scan. “I’m an accountant,” Jenny recalled. “They showed us the CT scan, and I just thought, that doesn’t look normal.” Kaley was immediately admitted to the ICU, where doctors discovered a mass in her brain. A biopsy confirmed the diagnosis: diffuse midline glioma (DMG), an aggressive pediatric brain cancer.

The prognosis was devastating. “They told us she will not survive this,” Jenny said. “Only 5 percent of kids live beyond 2 years… As parents, that’s not an acceptable answer.”

Kaley underwent surgery at Children’s Wisconsin to remove as much of the tumor as possible, followed by 6 weeks of radiation therapy. Those treatments would give Kaley more time, but they weren’t curative. Determined to find another option, Jenny and Chris began contacting hospitals across the country while researching online and connecting with other families. “We just refused to stop looking,” Chris said. “We’re math people. There’s always a solution to the problem; you just have to keep working at it.”

Through social media, they learned about an experimental therapy called ONC201, now known as dordaviprone, being tested at the University of Michigan Health Rogel Cancer Center and C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Led by pediatric neuro-oncologist Dr. Carl Koschmann, the trial was evaluating a first-of-its-kind drug designed to target tumors carrying the H3K27M genetic mutation which is the alteration driving Kaley’s tumor. The drug, taken orally, “crosses the blood–brain barrier and acts on dopamine receptors to slow tumor growth,” said Dr. Koschmann.

“We had just moved to Wisconsin,” Jenny said. “The trial is out of Michigan. It’s about a 6-hour drive through Chicago traffic. It’s been tough, but you’ll do anything for your child.”

Kaley began the ONC201 clinical trial in late 2020. She takes the drug twice a week and has experienced almost no side effects. “It hasn’t really interrupted her life,” Chris said. “She’s in the drama club at school, she plays softball, she gets to hang out with her sister and her friends, and it’s kind of just business as usual for her.” Every 9 weeks, Kaley returns to Michigan for an MRI. “With brain cancer, the only way we can really monitor it is through MRIs.” Jenny explained. “We would anxiously await results to see if the drug was working, to see if anything was growing. ONC201 has kept this demon at bay for us.”

Dr. Koschmann says Kaley’s story reflects what many families are now experiencing thanks to research breakthroughs. “Diffuse midline glioma is a very difficult tumor to manage. We don’t have effective therapies,” he explained. “Radiation does help slow the tumor, but it doesn’t get rid of the tumor. Dordaviprone changed that.” His research helped uncover how the drug works–by reprogramming cancer cell metabolism and partially restoring the molecular markers of normal brain cells. These discoveries are possible partially due to funding and advocacy from patient families and philanthropic foundations, like the ChadTough Defeat DIPG Foundation. These efforts led to the FDA approval of dordaviprone in 2025 for recurrent DMG, marking the first-ever approved therapy for this cancer.

Today, Kaley continues to take the medication while balancing the routines of teenage life. “She’s living a normal 9th grader’s life,” Chris said proudly. “And she’s really enjoying high school.”

The Ihlenfeldts remain deeply committed to advocacy and research. “We wouldn’t be here today if it wasn’t for cancer research–it sounds cliche, but it literally saves lives,” Chris said. Jenny added, “These kids deserve to live a full life, to go to high school and college, to get married and have kids of their own. We need to support cancer research.”