Kentucky declares September Childhood Cancer Awareness Month, as Eastern KY cancer crisis looms

A proclamation ceremony in Louisville put a spotlight on childhood cancer support- and on the unanswered questions still hanging over Eastern Kentucky.

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Balloons, families, a Harlem Globetrotter's memory still fresh on one little girl's face, and a lieutenant governor holding up a piece of paper that everyone in the room knew was about far more than paper.

Kentucky officially declared September as Childhood Cancer Awareness Month on Thursday, with Lt. Gov. Jacqueline Coleman presenting the proclamation on behalf of Gov. Andy Beshear at the new Family Resource Center inside Norton Children's Cancer Institute's Novak Center for Children's Health. The event drew families, advocates, hospital leadership, and staff from the resource center that's become, in just seven months, a lifeline for families across the region.

But underneath the celebration was a harder truth that everyone in that room understood, even if it wasn't the headline of the day: Kentucky has one of the highest childhood cancer rates in the country, and in the eastern corner of the state, doctors and researchers are actively trying to understand why a rare and deadly brainstem cancer called DIPG keeps showing up in kids who should never have gotten sick in the first place.

A resource center already helping across 130 zip codes

Dr. Michael Ferguson, chief of Pediatric Hematology/Oncology at Norton Children's Cancer Institute, opened the program by laying out just how urgent this work has become. Kentucky's childhood cancer rates are higher than the national average, he told the crowd, and the state has the sixth-highest rate of pediatric brain tumors in the nation. New diagnoses keep climbing.

That's the backdrop for why Norton Children's opened its Family Resource Center earlier this year- a place designed to do more than treat cancer, but to help families survive everything that comes with it: the finances, the school disruptions, the emotional toll. In just seven months, Ferguson said, the center has logged more than 1,400 interactions with families coming from over 130 zip codes across Kentucky, Indiana and the surrounding region, connecting them to financial counseling, social work, mental health services, school support, nurse navigation and art therapy.

"These numbers represent much more than the services provided," Ferguson told the room. "They represent families finding help when they need it most, barriers being removed, and children being able to continue learning, coping, and simply just being kids during an incredibly difficult time."

The center was funded in large part by the Norton Children's Hospital Foundation and the Kentucky Pediatric Cancer Research Trust Fund.

A family nine months into "the club nobody signs up for"

The most powerful moment of the afternoon didn't come from a politician or professional- it came from a mother.

Kim Clements stood up to tell the story of her daughter, Kaitlyn, who just nine months ago was a healthy, active teenager finishing out a normal week of school and a part-time job. Then came one strange week in November: fatigue, not feeling like herself, leaving her best friend's birthday sleepover early. A trip to urgent care for blood work on a quiet Sunday turned into an ambulance ride to Norton Children's Hospital by that evening.

Kaitlyn was diagnosed with ETP-ALL, a rare and aggressive subtype of acute lymphoblastic leukemia. As far as her family knows, she's the only patient being treated for it at Norton Children's Cancer Institute. She started chemotherapy that same night, spent 30 days inpatient before going home in mid-December, and has since gone through ten rounds of radiation to her brain. She's now in long-term maintenance and isn't expected to finish active treatment until March 2028.

"We now belong to a club that we never would have signed up for," Kim Clements said, "but we're extremely grateful for all of the people that we have met along the way."

She walked through the small army of people who carried her family through it- a child life specialist who handed her a journal the first night, a nurse who braided Kaitlyn's hair so it wouldn't mat during treatment, art and music therapists, a hospital chaplain, a parent navigator who introduced Kaitlyn to another newly diagnosed teenager so neither girl would feel so alone. Kaitlyn herself took the microphone briefly to talk about picking treats from the "Seth Squad Pantry" and the care she's gotten from her doctor and nurses- "the worst club to be in," as Ferguson put it, "with the absolute best people on the face of the earth."

The proclamation- and a warning about Medicaid

Lt. Gov. Coleman told the crowd she'd first visited the resource center back in January, when it opened, and called it "a sanctuary where families facing the scariest moments of their lives can find guidance, relief in a community that says you are not in this alone."

She pointed to real dollars behind that sentiment: $1.9 million in state support for childhood cancer patients announced last May, including nearly $1 million from the Kentucky Pediatric Cancer Research Trust Fund that helped launch the Family Resource Survivorship Center, followed by another $2 million in grants across the Commonwealth in November 2025, with $450,000 earmarked specifically for the center.

But Coleman also used the moment to draw a direct line between that funding and the fight in Washington over Medicaid, which covers close to half of Kentucky's children.

"When a family receives a cancer diagnosis, their world changes forever," she said. "In those devastating moments, the last thing a parent should ever have to worry about is whether their insurance will cover their child's next treatment, or if getting the life-saving care they need will force them into bankruptcy." Cutting Medicaid, she said, "doesn't just mean decreasing numbers on a budget sheet. This means cuts to treatments, medications, and specialists, and to hope that families cling to."

She then presented the official proclamation on behalf of Gov. Beshear declaring September Childhood Cancer Awareness Month in Kentucky- "a promise," she called it, "that Kentucky stands with our pediatric cancer patients, our survivors, and the families who hold their hands through every step of this journey."

Why this year feels different: the DIPG pattern in Eastern Kentucky

For families and doctors in this space, this particular Childhood Cancer Awareness Month is landing differently, because of what's been unfolding about 170 miles to the east.

I spoke with Dr. Ferguson after the ceremony to ask him directly about what's become an urgent, ongoing story I've spent months reporting on: an unusual pattern of cancer called DIPG- diffuse intrinsic pontine glioma, also called diffuse midline glioma- diagnosed in children in Eastern Kentucky, concentrated heavily in Whitley County. State health officials have confirmed 10 cases of DIPG/DMG in Eastern Kentucky children since 2024, in a state that typically sees only two or three cases total in an entire year.

Ferguson told me it's very much on his radar- and has been for a while. He said he's been working with Dr. John D'Orazio, the pediatric hematology/oncology division chief at the University of Kentucky, through the Kentucky Pediatric Cancer Research Trust Fund, comparing rates of high-grade gliomas between their two centers over the last five years.

"We have seen an uptick, particularly in the diffuse intrinsic pontine glioma," Ferguson said. He also pointed to a broader research effort, led locally by Dr. Eric Durbin at the University of Kentucky and Ferguson's colleague Dr. Megan Scruggs, looking at elevated cancer rates across Appalachia more broadly.

"We don't have answers yet," he said. "But we are actively studying that."

Why answers are so slow to come

I asked Ferguson the question I hear from parents constantly: why does research like this take so long?

He explained that pediatric cancer's rarity is part of what makes it so hard to study quickly. There are roughly 15,000 pediatric cancer diagnoses nationwide each year, compared to about 2.2 million adult cancer diagnoses- and DIPG is a small slice of that. Norton Children's sees only a handful of DIPG cases in a typical year, Ferguson said, which means researchers need to pool data across multiple institutions and states just to reach numbers large enough to draw conclusions from.

"In the next couple years, we're really going to hopefully have some answers of why- if it's a genetic-related thing or if it's an exposure-related thing," he said. But he was candid about the constraints: pediatric cancer research is a small fraction of overall federal funding, which limits how fast that work can move.

Real research, real hope- and a trial that could be a year or two away

Despite the grim statistics, Ferguson described active, promising research happening in his own lab- work that began in the lab of his late colleague, Dr. Bill Tse, who passed away last year. Ferguson's team is developing a CAR T-cell therapy for DIPG, and he said it has cured DIPG in mouse models in early testing. He was in South Carolina just last week meeting with the Beat Childhood Cancer Consortium to discuss expanding that work into a clinical trial- something he estimated could be a year or two away.

I asked him what it's like, as a physician, to sit across from a family and deliver a DIPG diagnosis, knowing there's still no cure.

"It is the worst feeling," he said, "when you get that diagnosis and knowing you have to do in the room to tell the family." But he said holding onto the research- even research that's still years from helping the child in front of him- is part of what makes those conversations survivable. "We're trying to give hope and trying to find different things that keeps me moving and makes me be able to see the next patient... even though it's not the easiest conversation to have with the family."

Before we wrapped up, Ferguson made a point of crediting the Kentucky Pediatric Cancer Research Trust Fund by name, noting his lab has hired two additional PhD researchers because of that funding. "Funding is very small from the NIH," he said- pediatric cancer research gets roughly 3% of the National Cancer Institute's budget. "If we don't have that funding, we can't do this research."

The bigger picture

Wednesday's proclamation was, by design, a celebration- of a new resource center already serving families from 130 zip codes, of a teenager ringing in long-term maintenance after nine brutal months, of state dollars flowing toward pediatric cancer research at a level few other states can match.

But for families in Whitley County and across southeastern Kentucky, awareness month means something more specific and more urgent: ten children diagnosed with an exceedingly rare cancer in barely two years, a state investigation still in its early innings, and doctors like Ferguson working against the clock on treatments that may not arrive fast enough for the children being diagnosed today.

I've spent much of this year reporting on that crisis in depth- including interviews with the families, doctors, and the local health director who first sounded the alarm. You can read that full investigation, For Childhood Cancer Awareness Month: The children of Eastern Kentucky.

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