JOHNSON COUNTY, Ind.— September is Childhood Cancer Awareness Month. Kids in Johnson County who have gotten the news of a cancer diagnosis themselves wanted to share their own stories.
Sitting around a table, the nine are part of a club no one wants to be in, a club they can recall the exact moment they joined.
“I mean it’s hard to cope with you know this happened,” Lana Johnson said.
Lana, turning 12 years old this month, was diagnosed with thyroid cancer in 2015. She’s undergone surgeries and radiation treatment since.
Chase Smith, 17, was diagnosed with Ewing’s Sarcoma. He’s gone through chemotherapy, radiation and surgeries. He is currently cancer free, but takes a daily chemo pill to try to keep the cancer from forming again.
Athena Velasquez, 14, finished her treatment in May. She underwent two and a half years of treatment for leukemia, enduring serious side effects.
Cooper Davis, turning 15-years old this week, spent 155 days in-patient while undergoing years of treatment for Leukemia. He finished treatment in July and is in remission.
Zane Davidson, 14, was diagnosed with Leukemia at age 10, undergoing 3 and a half years of treatment. He rang the bell signifying the end of his treatment last September and is now in remission.
Alayna Pittman, 11, was diagnosed with Leukemia after having frequent fevers and fatigue. Her family says she is in remission but will be on oral chemotherapy for at least another year.
Grant Harding, 7, was diagnosed with Leukemia when he was two years old. He finished his treatment in 2016.
Zac Wehnert, 9, had chemotherapy for Leukemia for more than three years. He finished treatment in January.
Owen Bostock, 10, was diagnosed with a brain tumor. He finished his sixth and final round of chemotherapy in July.
They’re the faces of pediatric cancer.
“It honestly just makes you think. Just why are there so many? Why do people have to go through this pain?” Zane said.
Some are meeting each other for the first time, but already understand what they’ve each gone through.
“It’s kind of cool, interesting and strange at the same time,” Owen said.
“You get to see other people going, well that have gone through the same thing you have,” Alayna said.
Linking these kids beyond their tough battles, though, is that they all live or have spent significant time in Johnson County.
“For me, honestly, it’s gotten so bad that like when you hear oh another kid’s gotten diagnosed at this school or this school, like it’s just like another day,” Chase said.
Some parents are on a mission to figure out why. Zane’s stepmom, Stacie Davidson, and Kari Rhinehart, who’s daughter Emma Grace died at age 13 from brain cancer, started the group If It Was Your Child to seek answers.
“How do I not put up this fight when she fought so hard?” Rhinehart said.
According to State Cancer Profile data, Johnson County’s childhood cancer rate, which includes cancer in those younger than age 20 from 2011-2015, is 21.7 per 100,000. That’s higher than the Indiana rate of 17.6 and the U.S. rate of 17.9, but not the highest county in the state.
To date, the Indiana State Department of Health said it has not found a pediatric cancer cluster in Johnson County or any type of cancer cluster in the state. State Health Commissioner Dr. Kristina Box addressed it following a community listening session in Franklin in August.
“Just because we calculated these cancer risks in ‘15 and then again in ‘17 and didn't find any evidence for cancer cluster does not mean that we are done continuing to monitor this and we going forward are going to do that,” she said at the time. “Our numbers when we look at them preliminary compared to what the young lady said in the audience today don't match but I am happy to sit down with them and if they can bring me names and dates of birth for these children we are happy to make sure that those children are on our registry.”
Davidson and Rhinehart believe there is a cancer cluster. They’re tracking the number of pediatric cancer cases on their own. Davidson said they’ve counted 57 cases of pediatric cancer in Johnson County since 2008, with 24 of them in Franklin.
“I think it’s good to get more awareness and to get people aware, like it’s a problem,” Athena said. “There’s too many kids too close together, it’s not a coincidence.”
“Yeah, like Chase was saying, it happens all the time and it’s odd. It shouldn’t be happening all the time,” Cooper said.
Some parents want to know whether anything in the environment is at play. They have questions about some sites in Franklin with documented past contamination.
It includes the former Webb Wellfield, part of a state-led clean up. The Indiana Department of Environmental Management said water from the wells was never considered unsafe for public consumption during their operation. It also includes the former Franklin Power Products and Amphenol site. It dates back decades, but since the 1990’s the U.S. EPA has overseen a clean up.
Now, the City of Franklin, IDEM and U.S. EPA are doing more testing and more investigating.
Meanwhile in D.C., The U.S. Senate passed legislation Tuesday that included provisions introduced by Sen. Donnelly to provide $1 million to implement Trevor’s Law. It deals with the investigation of potential cancer clusters.
“Trevor’s Law has not yet been implemented, that’s why I’m offering a simple amendment,” Sen. Joe Donnelly said last month on the U.S. Senate floor.
Federal officials previously said ISDH asked it and ATSDR to review its Dec. 2017 report on cancer rates in Johnson County to determine if it was consistent with CDC’s 2013 guidelines.
ISDH writes on its website in part “…ISDH’s current guidelines for responding to inquiries related to suspected cancer clusters align with the 2013 guidelines from the CDC and the Council of State and Territorial Epidemiologists. These guidelines have not changed since the passage of Trevor’s Law. The ISDH will continue to monitor for new guidance or changes in resources provided by federal partners.”
“I don’t want another single kids to have to go through what we went through,” Chase said.
Despite going through what they did, they’re kids that still have hopes and dreams like any other.
Athena says she wants to be a cosmetologist. Cooper wants to be a police officer. Alayna said she wants to be an actor.
“I want to be a chef and I like to stay home and sleep,” Zane said.
They’re kids that want to be known as more than their cancer.
“You have to find the good in it and try to show it to other people,” Cooper said.
“Try not to worry and everything’s gonna end up okay,” Owen said.
Despite their pain and heartache, they offer a sense of hope for each other and other kids fighting.