A little girl celebrates her first birthday. She’s wearing a party dress, sitting in a highchair before a huge pink cupcake. Lavender and pink balloons dominate the room. Her name is Kena, and she has a rare form of uterine cancer.
Kena’s story is part of “The Cells of Baldwin County,” a new documentary on the seemingly unusual number of children with rare cancers, primarily but not exclusively along the Eastern Shore. The documentary is scheduled to be shown Nov. 12 at the Fairhope Film Festival.
Kena was diagnosed at the age of 6 months. She didn’t live to see her third birthday. She died Sept. 29.
No one has ever proven that there is or was a childhood cancer cluster in Baldwin County, and no one can say what might have caused it. The national Centers for Disease Control defines a cancer cluster as “a greater-than-expected number of cases that occurs within a group of people in a geographic area over a period of time.”
But a visit to the Facebook page for Baldwin County Childhood Cancer Caregivers begs the question. There, Lesley Pacey has assembled 54 haunting photos of kids with cancer. Babies, toddlers, teenagers. Some who did not survive.
One who does survive is Pacey’s own daughter. Sarah Pacey was just inducted into the National Honor Society at Fairhope High School, and is healthy today. Her mother, however, has done too much research and met too many parents of children like Kena to let the questions go.
“The Cells of Baldwin County” was made to raise awareness and generate funding for research. The documentary has been shown at film festivals in Birmingham and Mobile and has already done its job. Pacey says the nonprofit foundation Eastern Shore Community Health Partners has received two $5,000 grants through Mary Riser, executive director of the Fairhope Film Festival, for private research.
“We’ll start in Fairhope and Daphne, just because we have to start small. We will take the names of the kids we know and some adults with rare cancer that we know about. We’re going to map it,” Pacey said.
If a pattern shows up, the group will start testing the water.
Too many children with leukemia
Sarah Pacey was 4 years old when she was diagnosed with an acute form of leukemia in 2004. “She was pale,” her mother recalls. “She started looking gray, would get real tired, wouldn’t eat, had a bad appetite.”
The child also suffered from headaches. Suspecting anemia, Lesley made a doctor’s appointment. The morning of the appointment, Sarah woke up with one eye swollen shut. A day later, she was hospitalized in Pensacola and receiving a blood transfusion.
“It was high risk because she had 80 percent blast cells in her bone marrow and 98 percent in her peripheral blood,” Pacey said. “That’s a pretty high amount of cancer vs. healthy cells. Basically, she was within 24 hours of her organs starting to shut down.”
Sarah went through two and a half years of chemotherapy but did not require a bone marrow transplant. By 2005, Lesley had heard of six other children in Daphne, Fairhope and Point Clear who had forms of leukemia that were supposedly rare. A former newspaper reporter, Pacey’s instincts kicked in, and she knew how to ask questions.
“I feel extremely fortunate,” Pacey said. “We’ve got this great kid. She’s healthy. She’s 16, makes great grades. She’s in the band. She’s just a good kid.”
With the help of Wilma Subra, a well-known scientist and environmental activist based in Louisiana, Pacey and other parents arranged a meeting with the Alabama Public Health Department. On the health department website they had discovered statistics showing there were seven new cases of leukemia in Baldwin County in 2001, and 17 in 2002.
“We felt like something in our environment changed around that time frame. It was the same way with brain cancer and the same way with lymphoma, and everything had doubled or tripled,” Pacey said.
The state Health Department agreed to study the apparent cluster in 2005. Pacey provided the names of 30 people to interview, but the state abruptly stopped interviewing and wouldn’t return her calls, she says.
Three years later, another parent grew concerned and they got the state involved again. By now, Pacey had 96 names to offer. This time, she says, the state noted anomalies in kidney and bladder cancer along with lymphomas and leukemia.
In December 2008, the Press-Register reported that a top health department official admitted there had been a childhood cancer cluster but that it had “dissipated.” The department said it was not properly equipped in staff, funding or protocols to do a proper follow-up.
Pacey, meanwhile, formed the nonprofit (www.easternshorechp.com) with Debbie Quinn, a former Fairhope city councilwoman. At one point, the University of Arizona came in and drilled in trees looking for contaminants. But it has never been determined if there’s something in the air, water, trees or soil that could be causing an abnormal number of rare cancers or cases of the neurologic disease amyotrophic lateral sclerosis (ALS), which is also thought to be unusually high in Baldwin County.
The University of South Alabama’s Mitchell Cancer Institute opened in September 2008. It has not been involved in the discussion. Asked for comment for this story, MCI director Dr. Michael A. Finan issued this statement:
“Our hearts go out to all families who are coping with the devastating effects of childhood cancer. Although our researchers are examining the role of certain proteins in leukemia, the Mitchell Cancer Institute has not conducted an epidemiological study of childhood cancer patterns in Baldwin County.
“There is an opportunity for a tremendous amount of research to advance knowledge in the field specific to this area.”
The next step in awareness
Pacey visited Washington, D.C., in 2012 for a national meeting on disease clusters. The other grassroots groups attending all seemed to have documentaries. Pacey says she realized that her message wouldn’t get out without one, but she had become discouraged.
Two years later she attended the Southern Exposure film series in Fairhope, where she met Mindy Keeley. Keeley, who lives in Alexander City, had made “Invasive in Alabama,” about the damage to agriculture and the environment in northern Alabama by feral hogs introduced by Spanish settlers in the 1500s.
They raised money to make the film through a Kickstarter campaign that ultimately brought in more than $5,000, well over the original $4,500 goal.
“I just thought it was terrible that there could be an environmental factor that’s causing cancer in the kids there. No one knows what it is and too many people are not doing anything about it,” Keeley said.
She was moved by the strength of the families she met. “It was probably the hardest film that I’ve made. After a day of shooting, you were just emotionally drained. I’d even get severe headaches from the emotions of doing it.”
Keeley said she used many water shots because of the questions raised about the possible cause being in the water.
After the Fairhope Film Festival, the documentary will be released online for broader access.
“The Cells of Baldwin County,” just under 18 minutes long, will be shown with several other “Southern Shorts” beginning at 2 p.m. Nov. 12 at USA’s Baldwin County campus (www.fairhopefilmfestival.org). It includes stories of other families in addition to the brief footage of Kena’s birthday party, and covers some theories about what may causing unusual cancers in Baldwin County.
Keeley said she’s putting together a separate video of the birthday party for Kena’s family.
Riser, who runs the film festival as well as two charitable foundations named for her grandparents, says she was interested when Keeley sent her the film, in part because she knows many cancer victims, too. She awarded the research grants in June as seed money.
“We’re just trying to find out why so many people have leukemia,” Riser said. “I don’t know what it is. I’m not a scientist type. But I’d like to find out.”
And a childhood cancer cluster may not be all. Because of the lack of professional research, reports are anecdotal and passed along among people who are concerned about whether environmental issues are causing cancer. Pacey says she has heard of 40 cases of rare sarcomas, among adults and children living along the coast from Bayou La Batre to Gulf Breeze, Florida, since the 2010 BP oil spill.
“We now have a new cluster on top of the old cluster,” she said.