The questions never seem to stop.
When Kari Rhinehart’s daughter, Emma Grace Findley, was diagnosed with an extremely rare brain tumor in 2014, she questioned how a cancer that normally only affects middle-aged adults could strike a 13-year-old girl.
After Emma’s death just three months later, she struggled with how she would go on without her baby’s smile, singing voice and ridiculous T-rex impersonation. Connecting with other parents whose children had been diagnosed with a form of cancer, she started to wonder why this was happening to so many children in the community.
“It would be easier, I think, to quietly move forward, stay in my own bubble and not ask any more questions. I cannot do that,” she said. “Emma and the rest of the children in our community deserve more than that. They deserve more from me and from every other person in this community.”
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For nearly two years, Rhinehart and a group of parents whose children have been diagnosed with cancer have banded together to find out why Johnson County has a seeming epidemic of childhood cancer. Now, they believe they have the tools to get those answers.
Recently passes legislation called Trevor’s Law expands the definition of a cancer cluster and makes it easier for state and local officials to get funding and work with federal agencies to better investigate increased incidences of cancer in close proximity. Local parents, working with the nonprofit group Trevor’s Trek Foundation, which helped write the law, are the first group in the country to use the law to call for help.
The group has taken up the rallying cry, “Not One More.” The goal is to take advantage of new resources to further investigate cancer in Johnson County, with the help of the Centers of Disease Control and other government agencies.
Ultimately, they want to ensure no child, locally or anywhere else, has to suffer through a cancer diagnosis.
“Today, we are blessed to have the opportunity to accept help and direction. And today, we fight, for those who fought and won, and we fight for those who can’t fight, and for those who haven’t been diagnosed yet,” said Stacie Davidson, whose stepson Zane Davidson was diagnosed with cancer in 2014. “Not one more child should have to hear those words and live through the hell and accept it is bad luck.”
Families whose children had been diagnosed, as well as friends and supporters, filled Compass Park in Franklin on Thursday for a public meeting announcing their plans.
Cancer survivors such as Evan Meade, who was diagnosed with acute myeloid leukemia in 2010, and Chase Smith, now going through treatment for his second bout with Ewing sarcoma, both spoke to the crowd.
Zane, who was diagnosed with acute lymphoblastic leukemia as a 10-year-old, and Cooper Davis, now finishing up a two-year ordeal to cure acute lymphoblastic leukemia, were sitting in the crowd.
All had come together to draw attention to the issue that Johnson County seems to have with childhood cancer.
Between 2010 and 2014, the age-adjusted cancer rate per 100,000 children age 15 and younger was 20.3. That was fourth highest in Indiana, according to the Centers for Disease Control. Indiana’s cancer rate was the only one in the state going up during that time period.
The grassroots group of local parents have tried to keep track of individual cases of childhood cancer, and going back to 2010, they have counted 39 children who have been diagnosed. That count is incomplete, since they realize there might be families they haven’t reached yet, Stacie Davidson said.
“You can’t tell me this is bad luck. And don’t tell me that we’re not above the national average. When you can walk through the oncology clinic and know several kids from Johnson County on any given day, there is a problem,” she said.
The parent group has been trying to seek out answers as to why the cancer rate seems to be so high locally.
An Indiana State Department of Health investigation in 2015 ruled that cancers impacting local children were not connected to the water supply. The numbers and types of cancers that children in the county did not meet the guidelines to be ruled a cancer cluster, the investigation found.
The investigation also determined that Johnson County’s childhood cancer cases were not caused by contaminated water, which had been a point of concern for local parents.
But those answers didn’t satisfy those families who have been rocked by cancer, said Patti Meade, Evan Meade’s mother.
“People think we’re crazy, but we’re not crazy. There’s something here. We don’t know if it’s water, we don’t know what it is. But you don’t have the amount of kids in a quarter-of-a-mile radius who have cancer. It just doesn’t happen,” she said.
In searching for answers, they connected with Trevor Schaefer and Trevor’s Trek Foundation.
Schaefer was diagnosed with medulloblastoma, a highly malignant form of brain cancer in 2002. The 13-year-old went through an eight-hour surgery to remove a golf-ball sized tumor from his brain, then years of treatment, including six weeks of radiation followed by 14 months of chemotherapy.
Schaefer co-founded Trevor’s Trek Foundation in 2009 to support finding the cause and prevention of childhood cancer. He was the inspiration behind Trevor’s Law, a bipartisan legislative effort that requires stricter regulation over the thousands of chemicals currently in production and any new chemicals introduced.
In addition, the Centers for Disease Control, Health and Human Services and other federal government agencies are now authorized to partner with state and local governments, institutes of higher education and the community to investigate and help address cancer clusters. President Obama signed the bill into law in 2016, and funding to better investigate cancer clusters has been made available.
Franklin will be one of the first cities to work with Trevor’s Trek Foundation to try to figure out what’s happening with the cancer cases locally.
The foundation became aware of Franklin’s plight after seeing past news stories about the concentration of childhood cancer in the region.
“They saw our story, and it’s so bittersweet. On the positive side, we were recognized. The negative side is exactly the same — we have so many cancer cases that we were nationally recognized,” Stacie Davidson said.
Officials contacted the group in Franklin, and asked to partner with the parents to investigate further the series of cancer cases in the city.
“We’ve been working with them for over a year now to try and get answers. What we need now is our local and our state government officials to get on-board with us and our concerns, to go to the federal government to request assistance through Trevor’s Law for the epidemic that we’re experiencing,” Schaefer said.
This week, Schaefer, foundation representatives and environmental engineers came to Franklin to meet face-to-face with the parent group. They also scheduled sit-downs with county commissioners, the county health department as well as Franklin Mayor Steve Barnett and Greenwood Mayor Mark Myers.
The group talked to Sen. Todd Young and Sen. Joe Donnelly, and a number of state representatives and senators.
With the help of Trevor’s Trek Foundation, they will continue to put pressure on state and national legislators to draw attention to the cancer rate in Johnson County.
“The more voices and more support we can get from the community is going to make this process a lot easier and a lot quicker,” Schaefer said.
The local organizers are also reaching out to others in the community, who have either had a cancer diagnosis or who are supportive of their effort.
“We have to fight to make this stop. We have to fight to be heard,” Davidson said. “Most of us feel helpless about what we can do as parents and as a community while we watch the numbers rise, all while doing the very best to protect our families. This is why we’re so blessed to have (Trevor’s Trek Foundation) with us.”
A group of Johnson County parents whose children have been diagnosed with cancer are banding together to ask for help investigating why.
The group has partnered with nonprofit organization Trevor’s Trek Foundation, which raises awareness about cancer clusters, to bring attention to the large number of childhood cancer cases in Johnson County.
They have started working with state and national elected officials, as well as Franklin, Greenwood and county officials, to begin a new investigation into the issue.
At the same time, the group has reached out to the community to support the effort, share their own stories about childhood or adult cancer and help implement an investigation in the county.
Supporters can follow along with the effort at its Facebook group page under the name …If It Was Your Child.