A Desperate Quest : Oceanside-Area Parents Persuade Health Officials to Investigate an Outbreak of Childhood Leukemia, but Chances of Answers Are Slim

Connie Smith lives with the horrifying thought that in trying to make a better life for her family, she may have put her son in the remorseless grip of cancer.

Six months after the Smith family moved to this seaside suburb north of San Diego, 1-year-old Kenneth Smith Jr., known simply as Junior, fell mysteriously ill and was diagnosed with acute lymphoblastic leukemia, which kills more children than any other disease in America.

As Junior began treatments, Smith met other parents of cancer-stricken children and together they discovered a startling fact that had gone undetected by doctors: An unusually large number of Oceanside-area children had been discovered to have leukemia about the same time.

Choosing to fight rather than grieve, Smith and the other parents banded together to persuade public health officials that they had discovered a cancer cluster in Oceanside and urge an investigation into the cause.

“There are a lot of babies getting sick and I don’t like it,” said Connie Smith. “My son is already sick but maybe there are other babies that we can help save if can we find out what’s causing this.”

Although cancer is common, clusters are not. The Oceanside cluster, now being probed by county and state health investigators, is one of only a handful of cancer clusters discovered in California in the last 30 years.

“We don’t want to panic anyone but we want answers,” said Charlotte Barry, whose daughter, Laura, is undergoing chemotherapy.

For Connie Smith and her husband, Kenneth, the unlikely road to becoming public health activists began two years ago when they decided to leave the community of Signal Hill near Long Beach. “I didn’t want my kids to die in a drive-by shooting,” Connie Smith said.

The family moved to a small apartment in a tidy corner of Oceanside. Kenneth was willing to endure the long commute to his job in Los Angeles as an oil company mechanic so that Junior and his sister, Kristian, 6, could grow up safely.

In Oceanside, Junior developed an unshakable cough, began to bruise easily and became chronically tired and cranky. Distraught and frantic for explanations for her son’s sudden decline, his mother accused a baby-sitter of mistreating him.

After being found to have leukemia, Junior began rigorous treatment at Childrens Hospital in San Diego, one of the nation’s leading hospitals for treating childhood cancer. During the many hours at the hospital’s hematology unit, Connie Smith began talking to other mothers of children undergoing leukemia treatment.

None of the women had known one another before their children began undergoing the anti-cancer therapies that are part of a leukemia patient’s daily rigors.

But Connie Smith, Charlotte Barry, Maryanne Smith, Linda Cotov and others began to suspect that there were an unusually high number of childhood leukemia cases in the area where they lived. The area, which has an approximate five-mile radius, includes the northeast section of Oceanside and adjoining parts of Vista and Bonsall.

Connie Smith and the others compiled a list of neighborhood children who were sick with leukemia and, after finding the public health agencies unresponsive, they took their list and their plea for help to the local media.

“We know God is protecting Hank, but if we can do something to help protect other children, that would be great,” said Maryanne Smith, whose son, Hank, needs a bone marrow transplant.

The public health system has concluded that the mothers were right: Seven children under the age of 3 were found to have leukemia during the middle months of 1993, a rate two to three times higher than the national average for the disease, a rate high enough to be considered a cluster.

In medical circles, there is considerable disagreement about cancer clusters and whether a cluster’s existence is anything more than a statistical anomaly, a random event. Some researchers even assert that it is medical folly to look for causes and that cluster investigations only cruelly raise the expectations of cancer patients and their families.

Experts from the San Diego County and California health departments, although committed to an investigation, have nevertheless warned the parents and press that the chances of pinpointing a cause for the Oceanside cluster are extraordinarily small.

The parents know this but are convinced that something is dreadfully wrong in Oceanside.

“I’m boiling mad but it doesn’t do any good to stay mad,” said Ernie Haro, whose son, Steven, needs a bone marrow transplant. “Somebody out there has to know something about what is in our soil or in our air that’s making our kids sick.”

The cluster list compiled by the mothers actually included a dozen children dating to 1991 who had contracted the disease. State and county health officials have limited their cluster investigation to the seven cases from 1993, including one child who died.

The cancer cluster has become the talk of Oceanside.

After the story was first aired on KFMB-TV, the local CBS affiliate, hundreds of calls from parents and would-be home buyers flooded the television station and the San Diego County chapter of the Leukemia Society of America.

“One caller said she was about to close on a house in Oceanside and asked whether she should go ahead or back out,” said Sharon Murphy, the chapter’s executive director. “It’s not right that people have to live with that kind of fear.”

Murphy hopes to get approval for an epidemiologist from the group’s national office to join in the county and state investigation. She is advising parents and others not to leave Oceanside.

Barbara Ross, whose 3-year-old daughter, Meghan, died of leukemia in November, 1992, lives near Charlotte Barry and Maryanne Smith. She said a neighbor called her at 6:15 one morning after reading about the cancer cluster in the Oceanside Blade-Citizen.

“She was really panicked,” Ross said. “She said, ‘Do you think we should move?’ I don’t think it’s time to panic but it’s time for concern.”

Ross said that she and her husband could never understand how their daughter had been so healthy when the family lived in Anaheim but became so sick just months after moving to Oceanside. “We couldn’t come up with an answer,” she said.

The Blade-Citizen’s coverage of the cancer cluster, praised as factual and restrained by parents and doctors, has nevertheless raised the anger of some in the business community. One real estate agent told the paper, “I have compassion for these people, but to make it look like Oceanside is the cancer capital of the world is unrealistic.”

The cluster investigators will start by comparing medical histories of the seven children to look for similarities in tumor size and physiology and for any common problems experienced by their mothers during pregnancy. Comparative biopsies are a possibility.

In more advanced cancer cluster investigations, like those undertaken by the federal Centers for Disease Control, air, water and soil samples are taken. If the Oceanside investigation gets that elaborate, environmental suspects abound.

Several of the homes are in new subdivisions on former agricultural sites, where pesticides were used for decades. Others are near high power lines. An abandoned dump site is in the area. Two victims lived near Camp Pendleton, where hazardous materials are stored.

And there is the “new town theory” held by some scientists who believe cancer clusters happen for a reason.

The theory, based on cancer cluster research in England, holds that certain diseases occur in higher proportions in new communities because people, in effect, lose their natural immunity when they move from more densely populated urban centers. The phenomenon was first detected among young polio victims in the 1940s and 1950s.

Dr. Stephen Waterman, chief of community disease control for San Diego County, puts the odds at finding a cause of the Oceanside cluster at less than one in a thousand. Others are less optimistic.

“There has never been a cause found for a leukemia cluster,” said Kenneth Rothman, editor of Epidemiology magazine.

In fact, the very meaning of clusters, and whether they are anything more than statistical blips, is hotly debated among epidemiologists, whose specialty is the investigation of the causes of disease.

“Cancer clusters are one of the issues that have tortured epidemiologists for years, particularly with leukemia,” said Dr. Dimitrios Trichopoulos, chief of epidemiology at Harvard Medical School. “It challenges common sense; if there is a cluster, there must be a reason. But so much in medicine, like in life, is just chance or bad luck.”

Rothman wrote an article for the American Journal of Epidemiology, “A Sobering Start for the Cluster Busters Conference.” In it, he doubted the scientific wisdom of spending time and resources investigating most cancer clusters.

The state Department of Health Services takes a somewhat contrary viewpoint. Dr. Raymond Richard Neutra, one of the department’s cluster hunters, wrote a spirited rejoinder to Rothman in the same academic journal.

Like Neutra, Dr. Eva Glazer, a state health department cancer expert who is working on the Oceanside cluster, takes the long view.

Even if the cause of the Oceanside cluster remains unknown, the information gleaned may someday contribute to cracking the mystery of clusters, Glazer said. She notes no new cases have been diagnosed since October, which tends to support the random-event theory.

The long view, of course, is hard to accept for parents whose children have gone bald from chemotherapy, are subject to a daunting list of infections and complications, and whose chances for survival are listed at less than 50%.

Connie and Kenneth Smith have moved from Oceanside, saying they want to escape the overhead power lines--although there is no proof that electromagnetic fields from power lines cause cancer.

Their daughter, Kristian, is being educated at home for fear that she might bring home an infection from school that would kill Junior, who is recuperating from a bone marrow transplant. Kristian was the transplant donor.

Maryanne and Chuck Smith, initially buoyed by the news that Hank was responding marvelously to chemotherapy, were crestfallen recently when their doctors told them that Hank will need a bone marrow transplant after all.

Charlotte Barry’s daughter, Laura, is adjusting to weekly chemotherapy sessions that leave her weak and nauseated. “She has a very strong body and a resilient soul,” her mother said.

Linda and Steve Cotov have moved so their daughter, Courtney, who is not yet 2, is closer to Childrens Hospital. “If we could find a cause for this, maybe it would be easier to bear,” Linda Cotov said.

Ernie and Valerie Haro are waiting for a bone marrow donor to be found for 2-year-old Steven. Unfortunately, no family member is a match.

“He’s so young and he may not ever get a chance to hit a home run or kiss a girl at the beach,” Ernie Haro said. “I just want to know the reason.”