I’m in a lab at Florida Gulf Coast University, talking to a 4-year-old about every photo in her mom’s camera roll.
Her mom, Alana Underwood, asked Curious Gulf Coast, “Is there some factor in this area that’s causing more cases of pediatric cancer than other parts of the nation?"
Most cancer research revolves around finding a cure, but on the campus of Underwood’s alma mater, there is a new registered student organization, the FGCU Cancer Research Program, which is doing preventative research into what causes cancer in the first place.
Underwood is holding her daughter on her hip, as we crowd into the small lab space the group shares with a genetic study of fruit flies. One of the tiny flies escapes its test tube and buzzes past student researcher, senior biology major Sara Lohbauer’s ear. She swats it away with a sigh.
“We work more on the molecular basis of cancer as to what causes certain types of cancer," Lohbauer said.
Lohbauer uses an eyedropper to carefully add a drop of 33 percent acetic acid to each cell plate on the tray she prepped two days earlier. When she’s done, she places the tray on a machine that rocks slowly back and forth to gently break the cells off their slides.
“We’re going to look and see — after we lyse the cells, break them apart and get everything out of them — how much difference there is," Lohbauer said.
The group’s adviser, professor Lyndsay Rhodes, said the program formed, in large part, to fill a need in the area.
“Even though we have great cancer research in the state of Florida — at the Moffitt Center, at the Mayo Clinic, at other larger universities — Southwest Florida doesn’t really have a cancer research hub.”
The region does, though, have a children’s health hub, found at Golisano Children’s Hospital in Fort Myers, which just moved into its own building.
When Melinda DeJesus recently brought her 3-year-old daughter there, Medical Director Dr. Craig MacArthur assured her that modern medicine could treat cancer better than it did five years ago. Her daughter, Shoshana, doesn’t have cancer though. DeJesus had brought her in because her daughter Lilly did, five years ago, when treatments weren’t what they are today.
“A couple months prior to diagnosis, she had broken her collarbone, and that’s kind of another sign — when kids break bones easily," DeJesus said.
DeJesus has four children including Shoshana, who many say is the spitting image of her sister.
DeJesus disagrees though. She said unlike Shoshana, by age 4, Lilly was very pale; her hair was the color of clay, and her stomach was distended. She didn’t think anything of those things, until one night, during their usual tickle time, she noticed a lump on Lilly’s side. After a night of tests, DeJesus was still waiting for answers when she began pacing the hospital halls.
“A doctor approached me and said, 'Are you Lilly’s mom?' and I said, 'Yeah.' And, it was Dr. MacArthur, and he said, 'Well, I’m sure, at this point, they’ve told you, right? That she has what we would call stage 4? Because it’s in numerous parts of her body,” DeJesus said. "He said he was leaning toward neuroblastoma — and me, nor anyone in my family or any one of my friends — no one had ever heard the term."
According to St. Jude Children's Research Hospital, neuroblastoma is one of the most common types of pediatric cancer. It accounts for 7 to 10 percent of diagnoses in the U.S. The survival rate of children diagnosed with neuroblastoma is now up to 9 out of 10 cases in infants, but not for those who are diagnosed closer to age 5, like Lilly. Older children typically don’t get this form of cancer, but when they do, it’s much harder for them to recover.
“By Lilly’s age, no one really lives," DeJesus said. "At that time, they told us there was a 12 percent chance of survival, but we didn’t get that. We were like, 'Oh, well, then, she’ll be in that 12 percent.'"
By the time Lilly was diagnosed, she was in the high-risk age category, and tumors had grown in her lungs and abdomen. After 10 months of chemotherapy, surgeries and stem cell transplants, Lilly lost her battle to cancer on June 10, 2012.
"It was weird. Like, I don’t want to cry. It’s funny because I talk about it a lot, and I never cry," DeJesus said, wiping away tears. "We had like 40 people in the room. We had so much family. And, a lot of people don’t want people in the room, but she loved family and family loved her.”
Unfortunately, that familial connection can also be found in the cancer itself, which is why DeJesus said she is paranoid about Shoshana, who never got the chance to meet her sister. DeJesus takes Shoshana, and both of her sons, to Golisano Children’s Hospital the second any of them have similar symptoms.
The statewide rate of pediatric cancer is 13.6 cases per 100,000 children per year. According to Golisano’s numbers, though, the Southwest Florida rate is 19 cases — close to 30 percent more per capita.
This rate is calculated through the use of cancer registries.
“It basically shows what their diagnosis is, where they were diagnosed, what their age is, what their race is, all these sort of demographic things, and zip code is what is used as a marker for geography,” said Dr. Craig MacArthur, Lilly's oncologist.
MacArthur, the medical director at Golisano Children's Hospital, said the issue with identifying whether there is a cancer cluster is that patients are registered where they are diagnosed, rather than where they lived when the cancer began. Lilly DeJesus lived in Bonita Springs. She was registered in Southwest Florida, but so was another little boy MacArthur described.
“I have a young man that, about a year and a half ago, was diagnosed with non-Hodgkin's lymphoma. He was 4-years-old," MacArthur said. "He lived his first three years and 11 months of life in Flint, Michigan and, then, moves here and gets diagnosed with cancer. Now, is that a Florida cancer case?”
Daniel Humphrey has been almost silent for the past hour. Each time I’ve asked him a question, his sister, Sianna, has waited for the shrug of his small shoulders before answering for him. His mom, Betsy Aguirre said you usually can’t get him to stop talking, but I figure I’ve made him nervous — some stranger on his couch with a Taser-looking recorder and bulky headphones.
Daniel speaks his first words to me as he shows me his toy box in the room he shares with Sianna. It’s filled with gifts, as is the hall closet and his grandmother’s closet down the hall. They’re all from his 5th birthday his family wasn’t sure he’d live to see.
“It’s just the scariest feeling in the world," Aguirre said. "I can’t even really describe it. Just, me, myself, I didn’t really understand it, so..."
Betsy Aguirre wipes away tears, as she looks over at her son, who has tucked himself into the couch beside her.
After moving to Florida from Flint, Michigan, Daniel started having stomach problems that just wouldn’t go away. After a couple months of misdiagnoses at Lehigh Regional Medical Center, Aguirre took him to Golisano Children’s Hospital, where MacArthur told her and her husband that Daniel had stage 3 non-Hodgkin’s lymphoma.
Cancer among Southwest Florida’s children spurred Alana Underwood to ask Curious Gulf Coast the question that began our research.
Underwood had seen a 2010 paper called “Epidemiologic mapping of Florida pediatric cancer clusters” written by a team of statisticians and oncologists from the Nemours Center for Childhood Cancer Research and the University of West Florida. It was published in the journal, Pediatric Blood & Cancer.
Dr. Chatchawin Assanasen was the clinical pediatric hematologist/oncologist on the team. He said they initially went into their research thinking it would be a routine analysis.
“The surprise when we began doing some of these statistical analyses regarding cancer clustering was very real," Assanasen said. "We did not have an intention of finding a cluster."
The team’s research revealed a higher rate of pediatric cancer cases in North Florida, leaning east, and in South Florida, toward the west coast.
“The cluster was not bad in the terms of degree, but our cluster that we identified (sic) were actually very large in geographical and spatial region," Assanasen said.
The size of the suspected cluster raises the question of if it meets the Centers for Disease Control and Prevention’s criteria to be considered an actual cluster.
The CDC defines a cancer cluster as “a greater-than-expected number of cancer cases that occurs within a group of people in a geographic area over a period of time.”
While the local Golisano Children's Hospital data shows a greater-than-expected number of cases, it’s unclear if the suspected cluster meets the rest of the CDC criteria, which includes that all cases evaluated must be of the same type of cancer or types of cancer proven to have the same cause.
“With respect to the size of these cancer clusters and their durability with different approaches to statistical analysis we felt that this was indeed a new and unique approach,” Assanasen said.
The CDC criteria also notes it is possible to “create” or “obscure” a cluster by selecting a specific geographic area. The CDC would not do an interview for this story. It directed us to the Florida Department of Health, which also did not return requests for an interview.
Confirmed cluster or not, Assanasen and his team said the risk of pediatric cancer in their study was 36 percent higher in South Florida between the years 2000 and 2007. Based on the local hospital’s numbers, though, in more recent years, that rate has dropped to 29 percent in Southwest Florida. And, Dr. Craig MacArthur said that rate is unreliable still.
“This is the number of cases per year,” MacArthur said, spinning his computer screen toward me to display the data he charted of Golisano’s cases versus the state’s numbers. "There’s a whole lot of year-to-year variability. Nobody would look at that graph and say that there’s an increasing amount of cancer cases that we are seeing.”
Credit Craig MacArthur/Golisano Children's Hospital
While Golisano Children’s Hospital is not seeing a rise in cases, it is consistently seeing about five more per capita, though MacArthur said he can’t say why.
“Most of our kids are being diagnosed in under 10 years of age, and so, even if they were exposed to something that we know is a proven carcinogen, they’re not having the exposure time to explain that,” MacArthur said.
Dr. Chatchawin Assanasen said his team could not give reasons for what they saw either.
“That would involve a much broader and, in some instances, a much more committed effort, to be able to kind of drill down to identify possible causes,” Assanasen said.
For Daniel Humphrey’s mom, Betsy Aguirre, spending time speculating about how Daniel got sick would’ve been a waste. She said her main concern when she first sat down with MacArthur was finding out what Daniel’s chances were.
“He told us the possibilities of everything, and he explained to us, that if this was eight years ago, we’d have something to worry about," Aguirre said. "But, you know, medicine’s come such a long way that his chances are phenomenal.”
After months of chemotherapy, Daniel went into remission in October of 2016. His hair has since grown back, and to the world, he looks like a typical 5-year-old.