After 14 rounds of chemotherapy, six weeks of radiation and two major surgeries — including a jaw reconstruction — Oliver Hensley is finally in remission from an aggressive type of cancer. He was just 5 years old and in kindergarten when he was diagnosed. His treatments spanned the course of a year.
“You would never think that you have to worry that your child is going to have cancer,” Kayla Hensley, Oliver’s mom, said during a phone interview.
Oliver was diagnosed with Ewing’s sarcoma, a rare cancer that mostly affects children and young adults. These tumors typically develop in bone or soft tissue. In Oliver’s case, one formed in his right cheek.
The Hensleys live in Nickelsville, a small town of fewer than 400 residents in Scott County, near the Tennessee border and the Tri-Cities region of Johnson City, Kingsport and Bristol. Like many in the area, they routinely travel across state lines for medical care. But when Oliver got sick, he had to go even farther — to St. Jude Children’s Research Hospital in Memphis.
His mom left her job at the Southwest Virginia Regional Jail Authority in Duffield, where she worked as a detention officer, so she could stay by her son’s side. Now, two years since his diagnosis, Oliver is in remission, but his mother’s worry hasn’t gone away.
“I almost don’t know how to live with myself anymore,” Hensley said.
The Hensleys aren’t alone. At least 12 other families in Scott County have had young children diagnosed with cancer in the last five years, an unsettling trend in a rural community of just over 20,000 people.
Concerned that the number of pediatric cancer cases seemed unusually high, at least eight mothers began organizing. With help from Megan Smith, a local oncology nurse, they started reporting the cases to the Virginia Cancer Registry, a statewide cancer surveillance system operated by the Virginia Department of Health.
Now, the LENOWISCO Health District has launched an investigation into a possible cancer cluster in the area.
Cancer clusters refer to an unusual grouping of cancer cases over a specific period of time and in a specific area or population, sometimes pointing to environmental causes.
True cancer clusters are extremely rare. In a 2012 review of more than 500 cancer cluster investigations over 20 years, only about 1 in 8 found a true increase in cancer cases and only one found a link to an environmental exposure, according to the study published in the National Library of Medicine.
Last week, the LENOWISCO Health District shared a survey on its Facebook page asking any parent or guardian of a child diagnosed with cancer between 2015 and 2025 to complete a form or schedule an interview. The goal is to begin gathering the data necessary to assess whether the current number of cases exceeds expected levels.
This first challenge in a cancer cluster investigation is having enough data to determine if there’s a statistically significant increase, according to Dr. Hari Iyer, an assistant professor in cancer epidemiology and health outcomes at the Rutgers Cancer Institute. He’s also the director of the Geospatial Data Hub, Center for Climate, Health and Healthcare at Rutgers University.
The scientists will need to compare the current rate of cancer to what has been seen previously, he said.
“The fact that [pediatric cancer] is a rare cancer and already this community is noticing several people, definitely I think it’s interesting to pursue,” Iyer said.
Cancer clusters are hard to prove
Proving a direct cause behind a potential cancer cluster is difficult, not only because having a limited number of cases to study makes it difficult to draw comparisons over time, but also because there’s a wide range of variables that affect individual health outcomes.
Everything from diet and access to health care to education, income and access to food and safe housing can all influence a person’s health, Iyer said. In a traditional cancer study, researchers can sometimes control for these factors. For example, they may follow the health outcomes of a specific population over time.
But in a suspected cancer cluster, so many uncontrolled variables are in play that it becomes extremely difficult to isolate a single environmental or external cause behind the rise in cases, Iyer explained.
Another complication is timing. Researchers typically don’t know when a person’s cells began mutating. Cancer can take years, even decades, to develop after exposure to a harmful substance. In some instances, cancers are hereditary, but this is rare when it comes to childhood cancers.
“We rarely ever know exactly when that transformation happens. Typically what’s going to happen is that mutation will occur when the person is [asymptomatic]. We only know about it once the symptoms become overwhelming, they go to see the doctor and the doctor performs some kind of diagnostic test and confirms it,” Iyer said.
In most confirmed cancer clusters, there is also a pattern — one type of cancer, or at least cancers from the same family, tends to appear across most cases. That hasn’t been determined yet in Scott County.
The Virginia Department of Health declined to share information about the specific types of pediatric cancers reported in the area so far, citing confidentiality concerns. The department did not answer questions about how many cases have been reported or what thresholds must be met to initiate an investigation of this kind.
Scott County case rate far exceeds the national expectation
Smith said she has spent 17 years working as an oncology nurse, primarily caring for adults. But when children in Scott County began being diagnosed with cancer about two years ago, she started reviewing published studies and reaching out to families.
She’s been in close contact with all the parents of children diagnosed over the past two years. Among the cases she’s tracked, at least four involve B-cell leukemia. Others, she said, include brain tumors that share similar features.
“That’s when I knew there was absolutely an issue,” Smith said. “And started being more outspoken about it.”
B-cell leukemia is the most common form of childhood cancer. Nationally, it affects about 4 children per 100,000 kids per year.
Based on national averages, a community the size of Scott County would expect to see less than one case in that time frame. Seeing four, more than 10 times the national expectation, raised alarm bells for Smith and other families. They began urging the state to investigate.
Smith mapped out the cases and found that at least eight of them — children with leukemia, brain tumors and other cancers — live between Duffield and Fort Blackmore.
Ashley Culbertson lives off a gravel road in Fort Blackmore, a small, unincorporated community along the Clinch River Valley. Her daughter Avyn was 4 years old when she was diagnosed with B-cell leukemia in March 2024.
At the time, her daughter’s long strawberry-blond hair flowed down her back. When the chemotherapy began, it started falling out in clumps.
“The hardest thing in the world is seeing your 4-year-old not being able to look at herself in the mirror because she doesn’t recognize herself anymore. You’d think it wouldn’t bother her too bad, but it was horrible. It was the most horrible experience ever,” Culbertson said.
Since then, Culbertson has met other families who have watched their children battle not only leukemia but also brain tumors, testicular cancer, thyroid cancer and bone cancer, she said.
Staying #ScottCountyStrong
These families have become a support group for one another, saying hello as they run into each other during treatments, Culbertson said. They’ve created a slogan in order to organize on social media: #ScottCountyStrong.
Photos of the families wearing matching T-shirts bearing the same message fill Facebook and Instagram feeds. Together, they’ve formed a kind of extended family.
The investigation into this possible cancer cluster could take months, even years. And it may never deliver a clear explanation.
Still, Smith hopes the health department will conduct an environmental study to rule out any potential contributing factors.
Other mothers are desperate for answers.
Amanda Taylor’s son, Gage, was 4 when he began complaining of pain throughout his body. His neck and chest were swollen. After multiple visits to the doctor, he was diagnosed with stage 4, high-risk neuroblastoma. The cancer has returned three times.
Now 11, Gage began his third round of treatment at St. Jude this March.
“I just want this to be looked into because it’s important. If it’s something we can stop, we need to stop it,” Taylor said.
Taylor typically keeps to herself, but when the Scott County Strong group formed, she joined. It’s the most active she’s ever been in her community, she said.
The search for answers may not yield satisfying results.
Much of cancer, unfortunately, is random, Iyer said. It is possible that the investigation won’t turn up any answers for these families.
Still, prompting the state to do an investigation is a very important and valuable first step, he said.
“Absolutely they should push researchers and the government to investigate these important problems, but also be mindful that cancer at the end of the day is mutations in randomness. It is possible that an explanation will not come for their specific case,” Iyer said.