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.
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.
School officials also were worried about publicity, but for a different reason. They feared public discussion of the leukemia problem would lead to declining enrollment at the school and, perhaps, open it up to lawsuits.
After three years of requesting assistance from the health department and failing to get meaningful answers, the nun finally gave up. She was transferred out of state in 1987.
Sister Joyce had strongly suspected that pollution might have caused some of the leukemia in Maryvale, which abutted several industrial areas. There was evidence to support such suspicions. In 1982, shortly before the nun first approached the health department, the city of Phoenix permanently closed two Maryvale drinking-water wells that were estimated to have served "well over 10,000 people."
The wells had been found to contain unhealthful levels of trichloroethylene. State records reveal the industrial degreaser and suspected carcinogen, commonly known as TCE, had been dumped into the ground by several high-tech plants located just one third of a mile northeast of the wells. Those records also show that underground water under those plants flows to the southwest--or toward the public supply wells.
New Times revealed the health department's failure to act on the Maryvale cancer cluster in an investigative report in 1987.
Maryvale residents were outraged. In public meetings, state officials promised Maryvale residents that credible health studies would be conducted by DHS--and overseen by the federal Centers for Disease Control (CDC).
Also, state officials promised, polluters would be forced to pay for environmental contamination.
At first, officials scrambled to find answers.
That same year, 1987, a "West Central Phoenix" state Superfund site was designated.
State environmental experts ran tests and asserted that the Maryvale environment was free from any environmental pollutant that might make kids sick. They said there was no problem with pesticides in the soils, no dangerous amounts of radiation, no contaminated drinking-water supply.
Then in 1989, two more Maryvale drinking-water wells were closed because of TCE contamination.
With oversight from a panel of out-of-state scientists appointed by CDC, the state conducted two additional statistical studies; it reconfirmed a higher-than-average rate of childhood leukemia from 1965 to 1986 on Phoenix's west side. Because of these statistical confirmations, in 1989 DHS promised it would conduct a "case control" study entailing lengthy interviews with "case" families of leukemia victims and "control" families of healthy children to determine what environmental influences might be associated with at least some of the leukemias. That study was originally to have been completed in 1991.
But as public interest waned, the state of Arizona reneged on its promises to the people of Maryvale. State inaction has not only prolonged the anguish of parents of leukemia victims; it has also protected the city of Phoenix from lawsuits and allowed suspected polluters to avoid paying expensive cleanup costs.
Public records recently obtained by New Times reveal that the state's reaction to the Maryvale problem has been indisputably slow and ineffective:
* The state's "case control" study is five years behind schedule.
* That study does not allow for a sophisticated inquiry into the possibility that drinking water might be linked to at least some of the leukemias. Ignoring contaminated drinking water as a potential cause of the cancer cluster helps protect the city of Phoenix and industries that polluted the water from liability.
* There has been no significant cleanup of the West Central Phoenix Superfund site.
* The state has allowed several suspected polluters to settle lawsuits without admitting liability--and for astonishingly low sums that won't begin to cover the multimillion-dollar cost of cleaning up groundwater on the west side. These settlements have been accepted despite eyewitness reports by factory workers that industries dumped TCE in the Superfund site.
Joe Guzman can't remember exactly when the stranger rang the front doorbell of his home, but it was at least 24 years ago, before Cathy died.
"You have a daughter with leukemia, and you want to save her," the stranger told Joe.
"But you can't save her. They all die."
Then the man turned and shuffled off into the darkness on West Osborn Road. Joe never saw him again. But he wonders now if the man was one of the Maryvale parents who'd lost a child to the disease.
Joe was terribly disturbed--is still disturbed--by the visit. At the time, the high school Spanish teacher was already under considerable stress. His daughter Cathy had been diagnosed with leukemia when she was 3 years old.
Cathy's medical bills, even with insurance, were overwhelming. As much as Joe longed to be with the child, he spent extra hours away from home trying to earn the money to care for his wife, Pauline, and six other children. Besides teaching, Joe worked odd jobs. He was a census gatherer, a night clerk in a hotel, a Spanish teacher for Peace Corps volunteers.
Pauline remembers that more than once she'd run to the phone and call her mother in New Mexico. "Mama, please get on the Greyhound," she'd say. "Come take care of the other kids; Cathy has to go to the hospital again."
Pauline still cries when she recalls returning home late in the day from Cathy's hospital room, trying to behave as if nothing were wrong, so as not to upset the other children. After Cathy died in 1972 at the age of 7, the doctor told Pauline to throw away her child's pictures, clothes and toys. "Get a job, Pauline," the doctor said.
Instead, Pauline became active in her Catholic parish--the parish where St. Vincent de Paul elementary school was located. She remains active in parish work today.
Never once, Pauline says, did anyone tell her of Maryvale's "cancer cluster" problem, of Sister Joyce's suspicion that there was an environmental link to the leukemia or of the nun's futile struggle to get the health department to conduct a meaningful investigation.
"The sisters must have kept it very quiet," she says.
The priests now tell her to forgive. She tries.
TCE was first detected in a Maryvale drinking-water pipe at 59th Avenue and Indian School Road in February 1981. But the city of Phoenix did not test for TCE in Maryvale drinking-water wells until a year and five months after the first detection, records show.
The city then shut two wells at 38th Avenue and Earll Drive (near the Johnson and Guzman homes) because TCE was present at levels almost six times the health standard that had recently been imposed by the Environmental Protection Agency.
Since at least 1987, the city has tried to protect itself from lawsuits that might arise from the Maryvale wells.
In sworn depositions, city officials have explained the 17-month delay between finding TCE in the Maryvale water line and testing drinking-water wells by saying, essentially, that they don't recall why they didn't test immediately.
Following news reports of the Maryvale leukemia cluster, city officials noted that west-siders were served a combination of canal water and well water. Sometimes well water was not used at all. What's more, the city asserted, the underground piping system was too complicated to figure out who got contaminated water. Therefore, officials said, it was impossible to tell which Maryvale homes got the TCE-contaminated water, how long they got contaminated water and in what amounts.
The city also huddled with the state health department. The result of the huddle was, again, a conclusion that it would be impossible to tell whether water was the cause of the cancer cluster.
For instance, in 1991, a city water official drew on a map several census tracts most likely to receive contaminated drinking water from the polluted wells. But informed critics say the map was misleading because it did not take into account the underground pipe system that determined which homes got the contaminated water.
Relying on this misleading map, the state concluded there was no link between contaminated city water and the leukemia cases.
DHS used this conclusion as the basis for a controversial decision. The state decided its "case control" study of Maryvale would look at many, many possible causes for childhood leukemia in Maryvale, including house dust, secondhand smoke and medicines mothers took when they were pregnant.
But the study would not seriously investigate whether TCE contamination of drinking water was a possible cause for at least some of the childhood leukemias.
DHS officials say they are still interested in the possibility of contaminated drinking water as a causal factor. But, they say, they are limited by a lack of data.
A Scottsdale water engineer working for west-siders suing the city says it is possible to get that data.
In a sworn affidavit, William Gookin says computer models can estimate when contamination reached drinking-water wells in Maryvale. When combined with historical information about the city's piping system and pumping records, Gookin says, that modeling can estimate which homes got the most contaminated water--a scientific estimate that the state claims is impossible to compile.
(Similar computer modeling was used by the Massachusetts Department of Public Health, which released a 1996 study that determined that childhood-leukemia cases in Woburn, Massachusetts, were associated with exposure by pregnant mothers to drinking water laced with TCE.)
Tim Flood is a DHS doctor who inherited the case control study after the former study director left DHS several years ago. Flood is not convinced that sophisticated computer modeling would determine whether TCE-laced water was a cause of some of the Maryvale leukemia cases.
"I would think that would be pretty speculative modeling," he says.
But there can be no speculation about one fact: Water and TCE aside, the Department of Health Services is more than five years late in completing its study. That $600,000 case control study was designed to include families of all 49 Maryvale children who contracted leukemia from 1965 to 1986.
DHS officials have long said one reason for the delay was the difficult, time-consuming task of locating families of victims who'd died years before.
But the agency apparently didn't look particularly hard for those families.
The Guzmans and the Johnsons, who lived near the contaminated wells, were not asked to join the study.
It would have been easy to find them. Neither of the families has changed addresses since their daughters fell ill with leukemia. Both families are listed in the phone book.
Another reason for the delay, per Flood: The study took on too many possible causes.
Flood says he warned the former director of the study "about the study being too ambitious, and he didn't really listen to me."
"I would like to get this thing out. I'm really disappointed in myself for not getting this thing out," he says.
There is another undeniable reason Flood has not completed the Maryvale cancer-cluster study: The state won't pay for a staff to assist him, and he is burdened with other tasks as medical director for DHS' Office of Chronic Disease and Epidemiology.
Flood acknowledges this lack of support with unusual candor.
"From my perspective," says Flood, "they give the minimum needed to say, 'Yeah, someone's working on the study.' But they sure don't give us much more support than that.
"It's mostly lip service."
At least one member of the CDC panel appointed to oversee the study says he hasn't heard from anyone connected with the study for three years.
"Looks like we were out of the picture," says Steve Lagakos, a Harvard University scientist who was one of the first to link the Woburn leukemias to TCE contamination in the early 1980s.
"I don't know whether they abandoned this committee I'm on and never bothered telling us, or what."
Each day, on her way to work, Bobbie Cabler dropped her infant son, Joey, at her mother's house in Maryvale. Bobbie's mother loved baby-sitting Joey, loved to rock him and hug him and give him his bottle of formula.
The attentive grandmother made sure the formula was not too hot, not too cold, mixed, half-and-half, with canned liquid and water she drew from the kitchen tap.
Bobbie was a kid herself back in 1976, when her son was born. She was 16 years old, proud, tough, sure she could make a doomed marriage survive if she just worked at it.
But Bobbie soon learned there were some things she couldn't fix.
When Joey was a little less than 2 years old, he got leukemia. Bobbie remembers carrying Joey home after the diagnosis, propping him against a pillow on the living-room couch. Her husband took a snapshot of the sleeping child, a photo she carries with her even today.
The leukemia took a particularly rapid course, and Joey died in his 18-year-old mother's arms a few days short of what would have been his third Christmas.
After nearly a decade, Bobbie remarried and had two more children. Outwardly, she's happy.
But inside, she grieves, and will always grieve.
Time passes. Joey would be 18 years old if he were alive. Bobbie is 36, but she remembers Joey playing with pots and pans in the kitchen sink as if it were last week.
"I have a little angel no one can take from me," she says.
"I want to see him again. Maybe if I lead a good life, sometime I will."
In the late 1950s, farmland near the intersection of 35th Avenue and Osborn was converted to industrial use. It was an area prized by semiconductor manufacturers and aerospace firms. Dozens of companies--including large ones like Nucor, United Industrial and Corning Glass Works--at different times owned factories in the industrial zone, which thrived from the early 1950s to the 1980s. (Even today, a few factories still exist in the zone, although not nearly as many as during the area's heyday.)
Today, the area is called the West Central Phoenix Water Quality Assurance Revolving Fund (WQARF), or state Superfund, site.
Recently, the state settled a lawsuit with two large companies suspected of being major groundwater polluters in an area of the West Central Phoenix Superfund site known as the West Osborn Complex. The area is located just a third of a mile northeast of two city wells found to be contaminated with TCE. And the area is "upgradient" of those wells, meaning that contaminants reaching groundwater in the West Osborn Complex would naturally have flowed toward the city wells.
The settlements the state reached were for small sums that won't begin to cover the cost of stopping the spread of the plume of groundwater contaminated with TCE, let alone repaying the costs of removing the solvent from groundwater.
The state agreed to these minimal payments even though there are documents in files of the state's environmental department showing that high-tech firms routinely dumped large amounts of TCE in the area.
A 1988 state Department of Environmental Quality report acknowledges that workers had complained to the agency about one company, Corning Glass Works, which owned a factory called Components Incorporated, which was located in the West Osborn Complex in the early 1970s.
A 1989 DEQ report says: "A record of anonymous complaints were found in the files of ADEQ [concerning the Corning Glass Works site]. Complaints refer to large vats of TCE located within and outside the buildings. The complaints indicated potential dumping of spent TCE . . ."
Corning Glass Works later said the charges were "empty" and provided "no evidence" that its factory "may have contributed to the discovered contamination . . ."
But a shop and maintenance manager for several companies from 1959 to 1972, including the Corning-owned plant, reported that "TCE was used in every building. People would use one-half buckets of TCE at their work area and throw it away when it got dirty. People threw TCE away all over the place like dirty water. Then the companies began using more and more TCE and the materials went down the ground to septic tanks. When the chemical resale value went up, companies recycled TCE."
The maintenance manager later changed parts of his story when contacted by lawyers for the companies he once worked for.
Last month, the Department of Environmental Quality estimated it will cost billions of dollars to clean Arizona groundwater. A very early estimate of the West Central Phoenix site suggested a $20 million cleanup cost, but that estimate is now considered to be low.
The settlements accepted by the state in regard to west-side pollution are tiny in comparison:
* In 1991, the Nuclear Corporation of America, also known as Nucor, which owned a company that from 1962 to 1965 operated an electronics plant in the West Osborn Complex, settled with the state for $1.275 million.
* This year, United Industrial Corporation, which owned an electronics plant at the complex from 1959 to 1962, agreed to pay cleanup costs that cannot exceed $4 million.
* Corning Glass Works, which owned an electronics plant in the complex from 1965 to 1971, agreed in July to the most laughable of the settlements--$750,000.
In announcing the Corning settlement, Russell Rhoades, the DEQ director appointed by Governor Fife Symington, said the Corning money would "provide a significant contribution toward the cost of cleanup."
And Arizona Attorney General Grant Woods, whose lawyers represented DEQ, said the Corning settlement "demonstrates that the Attorney General's Office is committed to aggressively pursuing Superfund litigation."
Actually, the state was all but forced to agree to the small settlement with Corning because a lawyer in the Attorney General's Office had failed to properly prepare the case against Corning. When a new state lawyer was assigned to the case earlier this year, he asked for an extension of time to conduct further investigation and introduce new evidence.
A federal judge turned the state down, saying the state had already "had more than adequate time to build its case" and was simply "not diligent."
The Attorney General's Office refused comment to New Times.
Rudy Bosquez Schroeder remembers how thrilled she was when, as a child, her parents purchased the little tract home near 37th Avenue and Earll Drive.
Rudy's parents bought the home 41 years ago, in part because the real estate agent had said the city would soon build a park in the neighborhood.
The park was never built, but no matter. Rudy and her three sisters and brother used the playground at nearby Madrid School as if it were their very own backyard. The school grounds were situated next door to what Rudy only knew as the big factories on 35th Avenue and Osborn Road.
The drinking-water wells on Earll Drive had not yet been closed when Rudy's sister Rosa was diagnosed with lupus, an autoimmune disease that has been associated with TCE-contaminated drinking water, in 1980.
And they weren't shut down when Rudy was diagnosed with leukemia in 1981. Since then, Rudy and Rosa have been exceptionally close.
The illnesses forced both women to give up good careers; Rosa was a manager for a bank and Rudy worked as an accountant for the city of Phoenix and the Arizona Attorney General's Office.
Rudy has encouraged Rosa through an unwanted divorce (stemming from the illness) and through three hip replacements resulting from bone deterioration caused by steroids Rosa had taken to combat the lupus.
Rosa in turn tries to lift her sister's spirits.
Rudy and her sister have seen a lot of illnesses, especially leukemia, in Maryvale. Their next-door neighbor died of leukemia, a friend's son died of leukemia, Rudy's former boss died of leukemia.
For a reason Rudy can't explain, she has survived. "Why do I keep on? That's a good question; I wonder myself," she says.
The mother of two grown sons, Rudy now lives in the northeast Valley, as far away as she can from Maryvale. She can't afford to get angry at the notion of large factories dumping chemicals into the ground right next door to a grade school and close to drinking-water wells. Or at her conviction that the state seems to stand by the companies, not the people.
"People in Maryvale were deceived by state environmental officials; they assured us . . . that there was absolutely no connection between our health and the environment.
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"Nothing they have done makes me feel any better."
But getting angry just makes her illness worse, she says, so she tries not to think about these things. She tries, instead, to stay alive. She takes 13 drugs a day. The medicine, especially the pain medication, has already damaged her short-term memory. She must now write important daily events in a spiral notebook she carries with her.
"Every once in a while, it hits me in the head. Bang! I realize how much I've lost," says Rudy.
She knows she may die soon. Good, she tells herself. I'll go to heaven. I won't be in pain.
"Then I think, God, let me stay around," she says.
"I'll take the pain.