In 1987, officials at Arizona's Department of Health Services promised they would study the high rate of childhood leukemia death in one portion of west Phoenix. The last phase of the study, which searches for causes of the so-called Maryvale cancer cluster, was to have been completed in 1991.
More than five years after that original deadline, the study remains unfinished. State officials now claim the study will be released by the end of this year. It is a familiar claim.
In the middle of last year, state officials said the study's results would be released by the end of 1995.
Karen's Story
Thirty-six years ago, Patricia and Roy Johnson paid $12,600 for a concrete-block home in the west Phoenix region generally known as Maryvale. Like hundreds of other young married couples, the Johnsons chose to live in Maryvale because it provided affordable housing, seemed like a safe place to raise children and was close to Roy's place of employment.
Roy Johnson installed and repaired business telephone equipment for a telephone company. He began his workday by reporting to the company yard near 38th Avenue and Indian School, just a five-minute drive from his house. Among other duties, he fixed equipment in the high-tech factories that had sprouted in the vicinity of 35th Avenue and Osborn.
In 1973, the Johnsons' youngest child and only daughter, 7-year-old Karen, fell ill with leukemia, an often fatal malignancy of the organs that manufacture blood. She died when she was 13 years old.
During the years that Karen was sick, Patricia and Roy and their two other children focused on giving the spirited red-haired youngster the happiest, most normal life possible.
When she was up to it, Karen attended school, played sports, ice-skated. Even though some children teased her because of her white, pale skin--a symptom of leukemia--she made good friends. But she recognized she was different from those friends, who planned on growing up, marrying, having children.
Karen hoped to survive long enough to attend Maryvale High School. She was afraid to go to sleep at night, fearing she might not wake up. Her mother sat up night after night, coaxing her to sleep.
Shortly before Karen died, she wrote her parents a letter and asked a neighbor to deliver the note after her death. In the letter, Karen thanked her parents for her life. And she said she no longer feared death.
After Karen died, Patricia and Roy gave away her white canopy bed, boxed her stuffed animals and dolls and stored them in the closet. The Johnsons converted her bedroom into a library for Roy, decorating the walls with family photographs and antique telephones and glass hippo figurines.
Still, 16 years after her death, it's almost as though Karen continues to live in the house. In the small living room, there is a large red woodcarving that spells "Karen." Near the carving is a photograph of Karen in her ice-skating outfit, wrapped in a frame that contains a mechanism that occasionally plays music. It is the Skater's Waltz.
And on a shelf opposite Pat's collection of Avon Cape Cod glassware, there is another framed photograph of Karen. There, she is leaning on a portrait-studio wagon wheel, wearing a white, wide-brimmed straw hat.
The Johnsons are convinced industrial contaminants caused Karen's leukemia. Roy recalls observing factory workers dump solutions onto the ground in nearby industrial areas. The Johnsons now know their house is situated very near drinking-water wells that were shut down two years after Karen died because they were contaminated with unhealthful levels of trichloroethylene, or TCE, a suspected carcinogen. And they know their house is located within a state Superfund site that has yet to be cleaned up.
In 1993, the now-elderly couple joined 45 other west-side residents in a lawsuit against the city of Phoenix and several industries.
The residents claim the industries polluted underground drinking-water reserves with TCE, and the city knowingly served them contaminated drinking water. This pollution, the residents say, caused a number of severe illnesses and deaths, including Karen Johnson's fatal leukemia.
The city and the companies have denied wrongdoing.
When the Johnsons--solid, working-class people--are asked to explain why they are suing, they say there is no other recourse. The state government, they say, has dragged its feet, failed to punish polluting industries, failed to give them answers as to what may have caused Karen's leukemia.
Money isn't the primary reason the Johnsons went to court, although they certainly will accept a monetary settlement. A serious lawsuit, they say, will make industries think twice before polluting and save other parents the suffering the Johnsons have experienced.
"It's hard to have a child for 13 years and lose her. I'd like to see executives from these companies . . . look at their daughters and their sons and think what life would be like without their children," says Roy Johnson.
"What we are after is justice."
Fourteen years ago, a nun who was the principal of a west-side Catholic school reported to the Arizona Department of Health Services that there appeared to be a high incidence of cancer, mostly leukemia, among children in Maryvale.
The health department looked at county statistics and confirmed a higher-than-expected rate of childhood-leukemia deaths in the area. But it refused to conduct a thorough epidemiological investigation of the problem. Health officials told Sister Joyce Weller that such studies were too expensive and almost never conclusively proved a cause for elevated leukemia death rates. The agency also suggested the nun not talk publicly about the "cancer cluster" so as not to panic the parents of her charges at St. Vincent de Paul Catholic elementary school.
