(WKYT) – State health officials are investigating an unusual pattern of rare pediatric brain cancer diagnoses in southeastern Kentucky after parents and health care workers raised concerns about five cases in the Corbin area.
The children were diagnosed with Diffuse Intrinsic Pontine Glioma, or DIPG, a highly aggressive pediatric brain tumor. According to the National Cancer Institute, about 300 children are diagnosed with DIPG in the U.S. each year.
An online petition organized by a concerned parent, Andrew Pennington, drew more than 3,000 signatures, pushing state health officials to act.
“It became kind of evident that there was a disproportionate amount compared to the population, especially of brain cancer or childhood cancers in general in our area,” Pennington said.
Community raises alarm
Hailey Owens, a registered nurse at Baptist Health Corbin, took to social media, alarmed by the number of cases.
“Honestly, just as like an emotional cry for help. This was our fifth child. This was, you know, it come, what one month after we buried children close to us,” Owens said.
Owens said 5-year-old Waylon passed away in March after a two-year battle with DIPG.
“Our community really rallied around (him). He was our first diagnosis in the area. It was devastating,” Owens said.
Since Waylon’s diagnosis, Owens and Dr. Mariah Jackson-Arnett, assistant emergency room medical director at Baptist Health Corbin, said at least four more children in and around Corbin have been diagnosed.
“There are four others that we’re aware of. Unfortunately, two of them have passed, and there has been one that’s been recently diagnosed within the past month,” Jackson-Arnett said.
Parents seek answers
Pennington said he is one of many concerned parents in the community.
“You’re wondering now, when my child wakes up, and they brush their teeth, is the water safe? You know, is the air we’re breathing safe? You know, you go outside here, and it’s beautiful here, you know, it’s kind of majestic in a way, the mountains, and when it turns green in the spring, is it really clean? Is it really safe? And people want to know the answer,” Pennington said.
Pennington said his goal is prevention.
“If it can save one child 30 years from now, then it’s worth it,” he said.
State looking into cases
Jackson-Arnett said she and roughly 20 other people took the first step in the process last week. The team included people from local health departments, the state, and the CDC.
“We had a really extensive conversation about the situation that we have. Like we said, we have five children,” Jackson-Arnett said. “We’re using an unspecified pattern of cancer at this moment. So we cannot definitively say that this is a cluster, but we’re saying that it’s an unusual pattern.”
Jackson-Arnett said the first step is identifying the children involved and registering them with the Kentucky Cancer Registry.
Next, investigators will determine whether the number of cases is statistically significant. If it is, they will begin interviewing patients and their families.
“It will be a very in-depth, thorough epidemiologic interview that would happen with these parents to determine if there is something that’s from the environment that’s causing these things,” Jackson-Arnett said.
The process will take time, but Jackson-Arnett said she is proud that her community is one step closer to getting answers.
“At the end of the day, this may be all incidental, but I think it is it is our job to make sure that if something is happening that we can change that we do change it,” Jackson-Arnett said.
The Kentucky Department for Public Health told WKYT it is committed to protecting the health and safety of all Kentuckians, especially children.
On May 12, Gov. Andy Beshear will sign proclamations recognizing May 17 as DIPG Awareness Day and May 21 as David Turner Junior Ice Cream Day in honor of a 9-year-old Kentuckian who died from DIPG.