Toms River (45 page)

Not everyone in town believed that. Linda Gillick kept hearing about more kids with cancer and inserting more pushpins into her map, which now hung at the Ocean of Love office. She still tangled occasionally with county officials—objecting to the use of asbestos in water pipes, for example—but Gillick and her board had more or less given up on asking for cancer studies. Besides, Ocean of Love was busier than ever providing services to families of stricken children. There were more families than ever to look after.

Gabrielle Pascarella was born on February 4, 1989, the year most people in Toms River thought their environmental troubles were over. Her parents, Kim, a lawyer, and Linda, a teacher, brought Gabrielle home and introduced her to her two big sisters, aged eight and four. Gabrielle was a beautiful baby but her pediatrician was mildly concerned about the large moles on her back, called nevi. The marks probably meant nothing but could be a symptom of a more serious condition. A surgeon removed the nevi, but Gabrielle cried a lot and seemed prone to infections. In early December, when she was ten months old, her parents felt a strange hardening of her fontanelle, the soft spot atop an infant’s skull. The bulge indicated that Gabrielle’s brain was under pressure. She was initially diagnosed with meningitis but large doses of antibiotics did not work, so the Pascarellas, like the
Andersons and many other Toms River families, made the long drive through the Pine Barrens to see specialists at The Children’s Hospital of Philadelphia. On December 24, they got a diagnosis: malignant neurocutaneous melanosis, an exceedingly rare cancer of the meninges, which are the membranes that envelop the brain and spinal cord.

“The doctors told us there was nothing they could do other than make her comfortable,” Kim Pascarella remembered. “They told us it was a terminal case.” The Pascarellas had no illusions about the likelihood of success, but they wanted to keep trying. They found a doctor at Memorial Sloan-Kettering who was trying an experimental therapy, which Gabrielle started on her first birthday. Linda Gillick, who had made dozens of trips to Sloan-Kettering already, made another one to see the Pascarellas. They were grateful for her support, even as Gabrielle’s condition worsened. Diagnosed on Christmas Eve, Gabrielle died on the day before Easter. She had lived fourteen months.

It was hard to believe that life could go on, but Ocean of Love and the fellowship of other families helped. The Pascarellas hosted the group’s annual “family reunion” at their home, and some early fund-raising dinners were held at a restaurant they owned. “We decided to make it a family project to stay involved,” Kim Pascarella remembered. “We saw what Linda was doing for these families, and we wanted to be a part of it.” Soon the annual reunion was too large even for the Pascarellas’ spacious house, and the annual dinner was too big for their restaurant. That was in part a tribute to Linda Gillick’s fundraising acumen, but it was also because there were more cases every year. Cancer seemed to keep finding the families of Toms River.

The steady accumulation of cases bothered Kim Pascarella, just as it bothered Linda Gillick and Bruce Anderson. Each diagnosis was a deeply personal tragedy that could only truly be understood by the other families who had been through it. But the large number of cases also seemed to have a
collective
significance, Pascarella thought. “It was hard to put your finger on it,” he remembered, “but there was just something in your gut that said this just wasn’t right.” Pascarella’s law practice included part-time work for the town; he was used to addressing problems in the community. Childhood cancer in Toms River, he thought, was starting to look like more than just a series of individual
calamities; it was growing into a community problem that needed a community response, though he had no idea what that response should be.

Having just agreed to conduct a study of childhood cancer incidence in Toms River, Michael Berry needed to figure out where Toms River was. That was a harder task than it seemed. There was no “Toms River,” strictly speaking. The Toms River region was a crazy quilt of overlapping jurisdictions stitched together since colonial times. Ever since 1768, when King George III issued a royal charter establishing the town, it had been officially known as Dover Township, but no one ever said that they were from Dover. The sprawling school district took the Toms River name, and the post office gave a large swath of the region, including parts of three adjacent townships, a Toms River address.

This confused history was not a trivial issue. Before he could figure out whether the rate of childhood cancer was unusually high in Toms River, Berry needed to know how many people lived there. Because Toms River was the best-known place-name in Ocean County, some families who told nurse Lisa Boornazian they were from Toms River may have actually lived in, say, Brick or Berkeley. Berry decided to deal with this by focusing his study on children diagnosed with cancer while living in three overlapping geographic areas. The first two were straightforward enough: Ocean County and the township boundaries. Then, to represent the town’s “core” section, Berry selected four census tracts covering about six square miles, coinciding roughly with the area the U.S. Census Bureau called Toms River.
³

Berry also had to decide which cancers to study. If he counted all childhood cancers together, he would be perpetuating the fiction that cancer was a single disease. On the other hand, counting each type of cancer as its own category was unworkable because there would be too few cases. Fewer than five thousand children lived in the Toms River “core”; a community that small would typically have just one case of childhood cancer—of any type—per year.
⁴
The incidence rate for any specific cancer type would be much lower still. In the Toms River core, even over many years, there might be just one or two cases
of any particular type of childhood cancer—so few that just one additional case would make a huge difference statistically, yet could easily be just a chance event.
⁵
Berry settled on an imperfect compromise between medical legitimacy and statistical validity: He would sort childhood cancer cases into fifteen groupings of similar diseases, plus an “all childhood cancers” group. Even though the groupings were large—perhaps too large to be medically defensible—most would generate only a handful of cases in the core zone. It was a compromise approach, one that Berry thought offered at least a chance of figuring out whether there really was something unusual going on in the town.

For all sixteen categories but one, Berry included all cases in children under age twenty, since Boornazian had said she was worried about young children and teenagers. But he decided to treat brain and central nervous system cancers differently by carving out a special subcategory for those tumors in children under age five. He did so because Boornazian had reported seeing a lot of brain tumor cases from Toms River and because a statewide study conducted the previous year had identified Ocean County as having a sky-high rate of childhood brain cancer: 70 percent higher than expected between 1980 and 1988. If pollution really were the cause, he reasoned, then very young children would probably be affected most, since there was solid scientific evidence that fetuses, infants, and toddlers were especially vulnerable to chemical exposures.

The last big issue Berry needed to face was time. Which years would he examine? On this question, he was entirely dependent on the flawed state cancer registry. There had been a few improvements, especially in reporting by out-of-state hospitals in New York City and Philadelphia, but by 1995 the registry was running four years behind, the most out of date it had ever been. The delay meant Berry’s analysis could not include cases diagnosed after 1991 or before 1979, which was the first year of fairly complete registry data. (It was also the year of Michael Gillick’s birth, which meant that he would be one of the first cases included in Berry’s analysis.) The only way Berry’s study could be both historically comprehensive and up to date would be to include years outside the 1979-to-1991 window of the registry—but
that idea was too impractical to take seriously. Who would pay the huge cost of digging up records in hospitals and doctor’s offices to find reliable data for 1975, or 1995, or any other year the registry did not cover?

The upshot was that if the deluge of industrial chemicals dumped and burned in Toms River during the 1950s and 1960s had triggered a cluster of childhood cancer in those years, Berry’s analysis would not be able to discern it because he had no information about cases diagnosed before 1979. Even worse, because of the four-year time lag at the registry, Berry would not be able to address, even indirectly, the question that so alarmed Linda Gillick and Lisa Boornazian: Was there
still
a cancer cluster in Toms River?

Having set the parameters of his study, Berry was ready to begin. He used the cancer registry to identify the birth address of every child under age twenty who had been diagnosed with cancer between 1979 and 1991 while living in Ocean County. Then he consulted local maps to double-check all of the addresses, making sure that they were classified correctly. Finally, he added up the cases, categorized the cancers, and laid out the results in a table. The one for the town and the core zone looked like this:
⁶

The data table confirmed what Berry already knew: There were precious few cases to work with. There was no point in even trying to analyze fourteen categories—everything but brain/central nervous system tumors, leukemias, and overall cancers, he decided. Even in those three relatively large categories, however, there were still so few cases that even if the totals turned out to be much higher than expected, he might not be able to rule out bad luck as a likely cause, especially if boys and girls were counted separately.

To find out if the local totals really were high, Berry calculated the number of pediatric brain cancers, leukemias, and overall cancers that would be expected in the county, town, and core zone if their rates were identical to the statewide average of all New Jersey children.
⁷
Then he updated his results table, calculating simple ratios that expressed the relationship between observed and expected cases in each category. (Any “incidence ratio” over 1.0 was higher than expected.) Finally, he added the special category he had decided to include for brain/nervous system cancers in children under five, as well as the countywide totals. The new table looked like this:

All it took was a quick glance at the results table for Berry to see that there was nothing typical about these children. In every remaining category, they had more cancer than expected. Just as importantly, all the remaining categories showed the same bull’s-eye pattern: Whatever mystery factor was affecting cancer rates seemed to be strongest in the heart of Toms River. For overall childhood cancer cases, for example, there were 7 percent more cases than expected in Ocean County, 31 percent more in the township, and 49 percent more in the core area. Most disturbingly, the biggest disparity was in the category thought to be the best indicator of a potential environmental problem: a sevenfold excess (three cases instead of the expected 0.4) for brain and nervous system cancers in children under age five in the Toms River core zone.