WKYT Investigates: Lincoln County toddler continues fight against rare brain cancer as Eastern Kentucky DIPG cases raise concern

(WKYT) – Bowen Pennington, 3, was diagnosed with diffuse intrinsic pontine glioma, or DIPG, in December 2025, one day before his third birthday.

“He came in, and he said that it was terminal brain cancer,” Cierra Pennington, Bowen’s mother, said.

DIPG is a rare and deadly pediatric brain cancer. The tumor grows inside the brainstem, the part of the brain that controls key functions including breathing and heart rate, making it inoperable. Radiation can ease symptoms but is not a cure.

The Penningtons decided against radiation treatment for Bowen.

“Why would I put him through things that don’t last?” Cierra Pennington said.

“It was definitely a lot of praying. Not an easy decision, but something that just didn’t sit right in the gut,” Ryan Pennington, Bowen’s father, said.

“When we went home without treatment, we thought we have three to six months, and, you know, life as we know it is over,” Cierra Pennington said.

However, that hasn’t been the case for the Pennigtons.

“Life is honestly no different now than it was prior to diagnosis, thankfully. A lot of families don’t get that opportunity,” Cierra Pennington said.

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Family monitors Bowen daily

While the Penningtons are grateful Bowen is doing well, each day still carries a quiet, constant vigilance.

“It’s constantly like, if he picks his spoon up different, we’re watching him,” Cierra Pennington said.

Even the smallest habits become a warning sign to watch because inside Bowen’s skull, the threat is anything but small.

“His tumor’s about the size of a brown egg… for a toddler’s head, obviously so that’s huge. But it’s not just the tumor. He has his shunt. We have to worry about the drainage. He’s had some brain bleeds from the over-drainage. Anything in the brain is very scary,” Cierra Pennington said.

At Bowen’s most recent scan, doctors flagged a new spot, about the size of a pea, showing more contrast than normal. The family is waiting until October for further results.

Bowen has started Modeyso, an FDA-approved treatment for diffuse midline glioma, including DIPG, as part of a clinical trial. The Penningtons said it is the first trial they have felt comfortable letting Bowen join.

“So far, he’s doing pretty good on it. But again, we don’t actually know what this tumor is or the properties of it. He’s been diagnosed only off of the imaging, and all we can do is follow that path that they have for that — but really there is no path. So we’re making our own,” Cierra Pennington said.

Other Eastern Kentucky families report DIPG diagnoses

About four months into Bowen’s treatment, Cierra Pennington said she learned of other Eastern Kentucky families dealing with DIPG diagnoses.

“There was a little boy who passed from Corbin, Waylon. And then Destiny — I started to kind of dig, and that’s when I realized we’re all really close,” Cierra Pennington said. “I started kind of questioning why were all these kids within an hour to two hours of us all getting the same cancer?”

The Kentucky Cancer Registry has confirmed 10 cases of DIPG in young people in Eastern Kentucky since 2024, compared to a typical two to three cases statewide per year, according to the Kentucky Department for Public Health.

State, CDC investigate possible causes

The Kentucky Department for Public Health said it has met multiple times with the CDC, its Agency for Toxic Substances and Disease Registry, and other agencies to determine whether environmental factors might be associated with the increase in cases.

The state said the CDC has agreed to analyze data across states to learn more about possible connections among DIPG cases. The state has shared the necessary data for that purpose.

Gov. Andy Beshear’s office said he was unavailable for a sit-down interview on the matter.

In a statement, Beshear said, “There is no known environmental or hereditary cause for DIPG currently, which presents a significant challenge for teams working to identify a contributing cause for a rise in cases like we have seen in Eastern Kentucky.”

Beshear added, “As a dad, and as someone who came to know and admire David Turner Jr. and his family, I’m committed to supporting the families affected and am having my administration work to secure additional support from the federal government. Since I took office, we have directed a record $45.5 million toward pediatric cancer research and family support, and we will continue this commitment to support childhood cancer patients and their families as we fight to find a cure.”

The Penningtons hope investigators will find answers, but they worry DIPG patients don’t have time to wait.

“Even if they did find a source of it, how fast are they going to fix it?” Cierra Pennington said.

A GoFundMe has been set up to help the Pennington family.