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.
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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 of Oceanside-areren 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.
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. 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 al Hill near Long Beach.
A desperate quest : oceanside-area parents persuade health officials to investigate an outbreak of childhood leukemia, but chances of answers are slim
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. But Connie Smith, Charlotte Barry, Maryanne Smith, Linda Cotov and others began to suspect that there were an unusually high 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 ading parts of Vista and Bonsall.
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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. 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 ofa rate two to three times higher than the national average for the disease, a rate high enough to be considered a cluster.
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.
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The cluster list compiled by the mothers actually included a dozen children dating to who had contracted the disease. State and county health officials have limited their cluster investigation to the seven cases fromincluding one child who died. She is advising parents and others not to leave Oceanside. She said a neighbor called her at one morning after reading about the cancer cluster in the Oceanside Blade-Citizen. 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.
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.
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 s and s.
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. 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.
Dimitrios Trichopoulos, chief of epidemiology at Harvard Medical School. But so much in medicine, like in life, is just chance or bad luck.
The state Department of Health Services takes a somewhat contrary viewpoint. 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. 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.
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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. Linda and Steve Cotov have moved so their daughter, Courtney, who is not yet 2, is closer to Childrens Hospital. 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.
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