Solving the Mystery of a Community Riddled with Cancer
One nurse's concern spurs an investigation into children's health.
The following story is excerpted from Toms River: A Story of Science and Salvation.
It is no small challenge to spend long days and longer nights in a place where children die, but Lisa Boornazian had the knack. She began working at The Children's Hospital of Philadelphia in 1991, during the summer of her senior year of nursing school at Villanova University. The following year she found a home in the cancer ward at CHOP. Back then she was Lisa Davenport, and not much older than some of her patients. "I loved working in oncology. I saw plenty of nurses who came to work at the unit and it wasn't what they expected. They just couldn't stay. But I loved it," she remembered. The ward was a surprisingly lively place, where little kids dashed down the wide hallways with their wheeled intravenous stands clattering beside them. The older children, though, were much more difficult to deal with. "The teenagers had a grasp of death, and what the diagnosis meant," Boornazian said. "The younger kids mostly had no idea." Those with brain or bone cancers faced long odds. Survival rates were better for children with blood cancers, principally leukemia and lymphoma, but their treatments took many months and were brutal: chemotherapy, often followed by radiation and bone marrow transplants.
The work shifts on the oncology ward were organized in a way that made it impossible for the nurses to keep an emotional distance from their assigned patients, since the same three or four nurses would take care of a child for months on end. Their relationships with parents were equally intense. Many parents practically lived in the ward and went home only to shower and change clothes before rushing back. The nurses worked under the unforgiving gaze of mothers and fathers driven half-mad by lack of sleep and the sight of their children enduring a pitiless cycle of excruciating needle sticks, nausea attacks, and dressing changes. Parents would frequently take out their anger on the nurses, and the nurses who lasted on the ward learned to respond without rancor or condescension. The long shifts, especially the sleepless overnights, created an intimacy among nurse, parent, and child that no one else could share--certainly not the doctors and social workers, who were mere transients by comparison. The nurses were family. And when it was time for a funeral, the nurses did what family members do: They showed up, and they mourned.
Funerals were part of the ritual of life on the oncology ward, and Lisa Boornazian (she married in 1993) attended her share, in towns all over New Jersey, Pennsylvania, and Delaware. One in particular stuck in her mind. It was for a vivacious young woman named Carrie-Anne Carter who was diagnosed with Ewing's sarcoma, a rare bone cancer, during her senior year of high school. She was in treatment for more than a year, and Boornazian grew very close to her family. When the teenager died on February 6, 1995, Boornazian decided to make the two-hour drive from Philadelphia to attend the funeral in a town she had never visited before: Toms River, New Jersey.
Although Boornazian had never been to Toms River, she knew the name well. By 1995, everyone who worked on the oncology ward at Children's Hospital knew about Toms River. Many years later, she explained why. "We began to notice that we were getting a lot of kids from the Toms River area" in 1993 and 1994, Boornazian recalled. "It wasn't just me. All of the nurses noticed it." CHOP drew its young cancer patients from a vast geographic area of more than ten million people, and some families would travel even farther--from as far away as South America and the Middle East, if they could afford it.
Yet when Boornazian and the other nurses would look at the charts of the two-dozen or so patients admitted to the oncology ward in a typical month, there always seemed to be at least one or two from a town with a year-round population of just eighty thousand people, or from communities nearby. "There was a certain point where, for a couple of months, we would get a new admission from Toms River every week," Boornazian said. It became a source of dark humor on the ward, with the nurses regularly asking one another: "I wonder when our next patient from Toms River is coming in?"
The doctors ignored the chatter. Boornazian raised the issue a few times with physicians she knew well. "I would ask them, 'Have you noticed this? Do you think there's something going on in Toms River?' " The doctors all told her the same thing: no. They said it in various ways, and with inflections that ranged from respectful to patronizing, but the core message never varied. "The general sentiment from the doctors was that it was just a coincidence, and that we shouldn't worry about it," Boornazian recalled. She did not take offense. The physicians ruled the hospital, and CHOP was not just any hospital. It was the oldest and most prestigious children's hospital in the United States, regularly finishing at the top of national rankings for pediatric care. How could the doctors be expected to pay attention to something as trivial as a home address? They were far too busy to get to know the families the way the nurses did. "The doctors rotate in and out, and I don't think they really realized how many patients there were who were from the Toms River area," Boornazian said. "It's the nurses who are there day in and day out, year after year. To us, it looked like a very unusual number of patients."
When Boornazian told other nurses on the ward that she was planning to drive to Toms River for Carrie-Anne Carter's funeral, they responded with wisecracks that were only half in jest. "People said, 'Oh, don't drink the water when you're there, and don't breathe too deeply,' " Boornazian remembered. From conversations with the Carters and other Toms River families, she had heard a little bit about the Ciba-Geigy chemical plant and its history of pollution. So she was a bit unnerved when, while driving to the funeral, she looked to her left at a stoplight on Route 37 and saw the fence and security gate of the sprawling factory complex. "I remember driving by and thinking, 'That's the plant that everyone talks about.' " For days afterward, she could not stop thinking about that big factory in the woods and about all the local families she had met in the oncology ward.
Lisa Boornazian was not a boat-rocker. In 1995, she was a twenty-four-year-old who loved her job and respected the hierarchy of the hospital. The doctors had told her it was just a coincidence that so many children on the ward were from Toms River, and she was inclined to take their word for it. They were very good doctors, and they gave their patients excellent medical care, even if they were too busy to get to know them. But she could not shake her uneasy feeling that the doctors might be wrong about Toms River.
She and her husband, Adam, came from large families and often got together on weekends with their siblings, many of whom still lived in the Philadelphia area. They were especially close to Adam's sister, Laura Janson, and her husband, Eric. A few weeks after Carrie-Anne Carter's funeral in Toms River in February of 1995, the two couples were having dinner on a Friday night, and somehow the conversation turned to the funeral and to Boornazian's worries about Toms River. The discussion was not something that she had planned. "It just sort of happened by accident," she would remember much later.
In their extended family, Laura Janson was an authority figure on environmental matters. She worked in the Philadelphia regional office of the U.S. Environmental Protection Agency, where she specialized in technical assessments of hazardous waste sites, though she had never worked on any in Toms River. After eleven years at the EPA, Janson was a bit jaded about information that came in from the public because it usually turned out to be confused, poorly documented, or otherwise unreliable. But this was different. Her sister-in-law was not an alarmist; she was a medical professional at a major hospital where thousands of children were treated every year. At dinner, when Boornazian started talking about all the sick children she had treated from Toms River, Janson listened. When Boornazian asked her to check to see if anyone at the EPA was looking into the issue, she agreed. Janson would later explain her decision this way: "When you work at EPA, people are always saying something's wrong with their water, but if it's your sister-in-law talking, and she's a nurse at CHOP who has made actual observations of cancer in children, you figure you'd better follow up."
Janson checked and learned that there were two Superfund sites in Toms River and that neither had been the subject of an EPA health study. Was the agency considering launching such a study in Toms River? No, it was not, she was told. So Janson decided to call another federal agency, one that few members of the public had ever heard of. The Agency for Toxic Substances and Disease Registry was, and still is, a backwater in the federal environmental bureaucracy. Congress created it in 1980, when anxiety about hazardous waste was at its zenith, just seven months after the evacuation of Love Canal. The idea was that the EPA would oversee dumpsite cleanups, while the ATSDR would advise the EPA on the health hazards posed by each waste site. But the ATSDR had very little money to do its job, especially as the number of Superfund sites ballooned in the late 1980s. By 1996, the EPA was spending well over one billion dollars per year (about 20 percent of its budget) on Superfund; the entire ATSDR budget, meanwhile, was just $60 million.
Steven Jones came to the ATSDR in 1992 from the EPA, where he had worked on Superfund cleanups in the Midwest. His new title, deputy regional director, suggested sweeping authority; the reality was that the ATSDR's regional office, which occupied a small corner of the EPA's space in Manhattan, consisted of just two managers: Jones and his boss. Their main responsibility was to make sure that state and local environmental health agencies were doing the work the short-staffed ATSDR could not do itself. Only rarely did Jones field calls from the public about supposed cancer clusters; when he did, they usually ended in mutual frustration. Like Laura Janson, he had been around long enough to know that ordinary citizens rarely understood what constituted a true cancer cluster.
So when Steve Jones's office phone rang one morning in March of 1995 and the woman on the end of the line started talking about a possible cluster in Toms River, New Jersey, there was no reason to think it would be anything more than another dead-end conversation. As Jones listened, though, he heard some things that caught his attention.
For starters, the caller was not a typical anxious citizen. Laura Janson introduced herself as an EPA employee, explaining that she was calling unofficially to relay the concerns of an oncology nurse, her sister-in-law, at The Children's Hospital of Philadelphia. Unlike so many callers, Janson was not passing along a vague report in which all of the most common types of adult cancer-- lung, breast, skin, and all the rest-- were lumped together. She spoke instead about much rarer children's cancers, especially brain tumors. "What she was expressing to me was very specific," Jones remembered. "I felt like I wouldn't be doing my job if I didn't follow up. Someone needed to look at it."
Like Lisa Boornazian and Laura Janson, Jones knew almost nothing about the sordid history of chemical pollution in Toms River. Also like the two sisters-in-law, he was neither a rebel nor a starry-eyed idealist, and he was anything but a naive civilian. Jones, Boornazian, and Janson all worked inside sprawling, risk-averse bureaucracies. They had been around long enough to be a tad cynical about the outsiders, the amateurs who were always demanding investigations without knowing the facts. And yet, in this case, all three felt that they could not ignore what they were hearing. The numbers were too high to dismiss as coincidence, and each case represented a face, a child, and a family.
Under the circumstances, Steve Jones felt that he could not say no to the EPA employee who called him, just as Laura Janson felt that she could not say no to her sister-in-law, the oncology nurse. As for Lisa Boornazian, she, too, felt that she had no real choice. She had to speak up for the memory of Carrie-Anne Carter and all the other Toms River children who had come through the cancer ward. They deserved an answer.
Excerpted from TOMS RIVER: A Story of Science and Salvation Copyright (c) 2013 Dan Fagin. Excerpted by permission of Bantam Books, a division of Random House, Inc. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.