Bitter Harvest -
Four Huntington Beach kids have died of a rare disease. Officials say there’s no pattern. The parents say the answer could be underground
Posted on: 04/07/2004
Editor's note: Click on link above to view the story with photos.
Bitter Harvest -
Four Huntington Beach kids have died of a rare disease. Officials say there’s no pattern. The parents say the answer could be underground
by Nick Schou
This is how it is at birth: you’re receiving into your hands a child, and from there you can see this amazing arc, a pyrotechnic display of pure possibility, always upward, without end, featuring images of success and happiness—kindergarten, high school, a graduation, maybe a wedding. And then the arc vanishes into vagueness. Because at this point, all you’re thinking about is the boundless potential wrapped up in your child. You’re not thinking about death.
So when the arc of Trent Olson’s life slowed and started inexplicably downward in January 2002—after just four years on this planet—when his smile disappeared and Trent began to throw tantrums, the last thing his parents were thinking about was mortality.
"I was told he had a behavioral problem," said Trent’s mother, Cheri-Jan Olson, a licensed nurse who lives in Huntington Beach. Olson tried to schedule an appointment but wasn’t able to arrange one quickly. As Trent’s arc continued inexorably downward, even picked up speed, Olson became convinced his problem wasn’t psychological. Trent was increasingly withdrawn. He went to bed early without eating dinner, slept all night and then woke up exhausted. When he played, Olson "knew something wasn’t right. He would run crooked, with his head cocked to one side and looking out of one eye."
When she dropped Trent off at her church’s preschool, he would scream, refusing to let go of her hand. A bystander told Olson to call a child behavioral specialist at UC Irvine. Over the phone, after hearing about Trent’s behavioral changes, the specialist told Olson, "You don’t need a child psychologist. You need a neurologist."
In the first week of May, Olson brought Trent to a neurologist who tested his reflexes and watched him try to run down the hall. "Trent was running like a crab, and right away she said, ‘He needs an MRI tomorrow.’" The next morning, Olson drove her son to Miller’s Children’s Hospital in Long Beach. She convinced doctors to allow her to stay with him while they ran an MRI scan of his head.
"The nurses were thanking me because I was able to comfort him," Olson said. "I sang to him and caressed him, and he lay perfectly still because he was such a good boy. I was watching him sleep, and I was praying. Then this guy comes in and says, ‘Your child has an inoperable brain tumor.’ I looked at the MRI screen, and there was this big white golf ball in the middle of the screen. It was so surreal. I was so calm."
When Olson and her husband returned home from the hospital that night, there were 19 messages on the answering machine. One of them was from Susan Junghans. Olson had never met Junghans but had heard about her from a mutual friend at church and knew that Junghans’ son David had died in October 2000 of brain stem glioma, a rare cancer with a 0 percent survival rate.
"Susan was the only person I called," Olson said.
Trent, it turned out, was the fourth child in the same Huntington Beach neighborhood diagnosed with brain stem glioma in just two years. All three other kids had died within months of diagnosis.
"When women hear their child has terminal cancer, some need to be sedated," Olson said. "They get hysterical. Everybody does different things. I was just in shock. But when I heard we had child No. 4, I refused to believe it was just dumb luck."
In June 2003, Trent Olson died, just 13 months after his diagnosis. In the previous two years, three other children in southeast Huntington Beach died from the same rare disease. Five-year-old Spencer Stockton died first, in February 2000. Eight months later, David Junghans, 11, passed away. Nine-year-old Nikki Ott died in March 2001.
Brain stem glioma is incredibly rare—between 200 and 400 cases are reported nationwide each year—yet here were four children in the same neighborhood with the same disease in just two years.
Officials say there’s no pattern; the parents aren’t convinced. They say Huntington Beach is killing their kids.
They’ve found at least two connections between the four cases. One is their southeast Huntington Beach neighborhood, much of which was once the site of extensive oil drilling. But there was another, more compelling link: Edison Community Park. It’s your typical municipal park—baseball and soccer fields, picnic tables, fire pits, and a playground. It also happens to be across the street from an ugly reminder of Huntington Beach’s industrial past: the Ascon/Nesi Hazardous Waste Site.
Sixty years ago, HB was little more than an oil field, owned and operated by well-connected corporations whose fortunes determined the pace of the nation’s economic progress. Low oil prices were key to California’s—and America’s—efforts to survive the Great Depression and emerge as the world’s leading industrial and military power after World War II.
In 1938, the oil companies started dumping their excess oil waste in an anonymous hillside dump operated by a company called Garrish Bros. Oil drilling was an unregulated industry in those days, and for decades, the oil companies filled the site’s five 25-foot-deep lagoons with highly toxic oil and construction waste.
In 1950, the dumpsite switched owners and became home to far more varied hazardous chemicals. Many are listed as cancer causing under California’s Proposition 65 public-notification law. Next to the lagoons, an open pit containing an equally toxic brew of styrene remained uncovered until 1988, when neighbors complained about the fumes. Officials solved that problem with a tarp.
Huntington Beach officials have been trying to clean up the dumpsite since 1992. That year, the City Council okayed a developer’s plan to remove thousands of gallons of toxic waste from the site—and pay for it by building dozens of new homes there. They were stopped by outraged nearby residents who showed up in legions to deliver a message: they’d rather live next door to a hazardous-waste dumpsite than more people.
Twelve years later, state officials say they are finally going to begin cleaning up the dump this month. It’s taken so long because, although Ascon landfill has been designated a California Environmental Protection Agency Superfund site, which qualifies it for state funds, it hasn’t been very high on that list.
Another reason for the delay is that officials still aren’t sure how safe it will be to remove the waste. They’ve considered burying it where it is; that would prevent developers from building any homes there. Removing the waste would allow new homes but might endanger nearby residents and is scheduled to take at least three years. Officials say about 250,000 cubic yards need to go—enough crud to fill 12,500 toxic-waste-disposal trucks at 4,000 gallons apiece. A single convoy to some remote desert dumpsite would stretch more than 70 miles, blocking the freeway, for example, from Surf City to Ventura County.
If a hazardous-waste site across the street from a kids’ park isn’t bad enough, there’s this: Edison Community Park is built atop a landfill and still generates so much methane gas that it must be constantly monitored.
County officials acknowledge the methane is a problem. But they say they’re carrying out "additional testing" and developing a plan with the Huntington Beach Fire Department.
The additional tests are necessary because the fire department’s original consultant on the site, GeoSciences Analytical Inc. (GSA), reported that Edison Community Park was methane-free. In October 2002, county prosecutors charged GSA falsified methane readings at the park. GSA admitted responsibility, and Dr. Fleet Rust, the company’s owner, was sentenced to probation and fined $1,000, although he’s still disputing a $76,000 restitution order.
"The consultant admitted he didn’t actually measure the methane, and he got his hands caught in the cookie jar," said Duncan Lee, an associate civil engineer with the Huntington Beach Public Works Department. "The city is still trying to get money from them because of all the extra work we had to do."
Lee insists Edison Park poses no danger to anyone. "After the GSA incident, we had to do everything over again. We hired another consultant, who came to the same conclusion—that there was no danger. Edison Park is a great park, and there is no indication it has ever been unsafe, and the fire department would be the first to shut it down if it was not safe."
In May 2001, a year before Trent was diagnosed with brain cancer, the parents of the first three children sent a letter to Dr. Hoda Anton-Culver, director of UC Irvine Medical Center’s cancer-surveillance program for Orange County. They asked her to investigate any possible link between their kids’ illness and the soil around Edison Community Park.
Anton-Culver refused to be interviewed for this story. But in a June 2001 response to the parents, she said there was no evidence the incidences of brain tumors in Huntington Beach were statistically significant. "We see no indication in the accompanying materials that children in Huntington Beach are at an elevated risk for brain stem glioma relative to Orange County as a whole, or that children in Orange County are at an elevated risk for that disease relative to California as a whole," she wrote.
Less than a year after that letter, of course, Trent Olson was diagnosed with brain stem glioma, and Cheri-Jan Olson became the fourth member of what she calls "the club nobody wants to belong to."
According to the National Cancer Institute, brain stem glioma usually affects white people—mostly small children and middle-aged adults. And because it attaches itself to the brain stem—a mass of vital tissue that controls the body’s most important functions—the glioma is almost impossible to remove.
The disease follows a familiar trajectory: the victim, typically a young kid, begins a devolutionary cycle—weak, tired, pale, moody, followed by hospitalization, hopeless chemotherapy. Beyond that, science doesn’t have much to say on the subject, except that no one survives brain stem glioma. "The biggest problem I faced as a parent was a lack of information," said Junghans.
David Junghans was the first of the Huntington Beach kids diagnosed. He seemed healthy until April 1999, when his parents noticed he looked haggard.
"Something was always wrong when he came back from school," said Junghans. "He had headaches and walked crooked and had to lower his head to the spoon when he ate his cereal. We called the doctor."
Doctors at Hoag Memorial Hospital ran David through an MRI scan and told Junghans to take her son to the Children’s Hospital of Orange County (CHOC). There, a doctor showed Junghans David’s MRI scan and pointed to the tumor. Junghans asked for a prognosis.
"He said, ‘It’s zero,’" Junghans recalled. "Ninety-five percent of patients die in the first year, and the other 5 percent die later. No one lives through this tumor." The doctor said an operation might prolong David’s life by nine months. "He lived another 18 months," she said.
"You have no idea how insidious this tumor is," said John Ott, stepfather of nine-year-old Nikki Ott, the third Huntington Beach child diagnosed with brain stem glioma. "They end up in a coma; they lose all functions one at a time. You can see it happening little by little. You don’t know what’s next."
In Nikki’s case, the Otts "started noticing a droopy face, a droopy mouth and eyes, and it steadily got worse. After the radiation, Nikki improved," Ott said. But it soon became obvious the tumor was growing again. "She had an increasingly unsteady gait and began vomiting. We did another MRI scan and found out the tumor was enhanced. She started to go downhill."
Nikki died on March 27, 2001.
"My daughter was very religious," Ott says. "She never complained. She knew she was going to a better place. She was the strongest person I ever met."
Olson never met Nikki Ott or Spencer Stockton or David Junghans before she joined the club. "There was only one connection we could find between all our children," she said. "Oil operations."
Given the decades of oil drilling that took place in Huntington Beach, there’s hardly an acre of the town that wasn’t exposed to some level of contamination from petroleum products.
"There were oil wells everywhere," said one city official who asked not to be identified. "And there are pipes all over this town that nobody knows about. Any time you put in a backhoe, you are liable to uproot some of this stuff. There are all kinds of soil contamination here.
"Chevron at one point owned 30 percent of the city," the official continued. "When Chevron was ready to get out of oil landholding and sell everything off, they figured the best way to maximize profits was to get a development agreement with the city."
In 1992, the City Council passed an ordinance making it easier for oil companies to sell their fields for residential development. Reading that ordinance, it’s clear city officials knew they were dealing with highly contaminated soil; it’s just as clear they put the financial health of wealthy oil companies ahead of the health of their constituents.
A copy of that ordinance shows that on July 22, 1991, Chevron Land and Development requested the city fire department raise allowable soil contamination by 10 times because the previous limit was "unnecessarily restrictive." The ordinance also states that GSA, the same firm that would later admit it falsified environmental data at Edison Community Park, "has been retained by the city of Huntington Beach to advise it in this matter and to assist in revision of the standard if such action is found prudent."
Ron Satterfield, a former Fountain Valley fire marshal, says Huntington Beach’s 1992 ordinance allows dangerous soil contamination.
"I think it is a big concern," he said. "Huntington Beach was nothing more than a big oil field. Because of the background of the community itself, we should be going to the highest standard to make sure the public doesn’t have to worry about the soil underneath their homes."
After doctors diagnosed Trent Olson with brain stem glioma in May 2002, he underwent a brutal regimen of chemotherapy injections. Within several months, he seemed to have recovered. Although his body was swollen from steroids, he attended preschool that fall. But on March 5, 2003, Trent said his foot hurt and his fingers felt fuzzy.
"I knew the tumor had returned," Olson said. "He was throwing food like he was retarded and acting out." Once again, the Olsons rushed Trent to the hospital. "He was hitting me the whole way there because he knew we were going to the hospital."
Doctors put Trent through another grueling, six-days-per-week regimen of chemotherapy injections. Doctors allowed Olson to stay overnight at the hospital for two weeks. "I packed my pajamas and lay in bed with him for two weeks," Olson said.
The chemotherapy required Trent to be anaesthetized. "I told him he was going to the field of flowers to see birds and animals," Olson said. "He would always relax."
But when it was clear Trent wouldn’t recover, Olson treated him to a visit to a mini-park for sick children and their families, the Give Kids the World Village just outside Orlando. In two weeks, Trent saw Disneyworld, the Epcot Center and Universal Studios courtesy of the Make-a-Wish Foundation. She also brought him to the wishing well near Cinderella’s Castle at Disneyland. "Trent said he wished he could grow up and drive a truck," Olson said. "He knew he was very ill. He wanted to be well."
Meanwhile, city officials are pushing forward with a massive project to build 500 condominiums, a hotel and several stores in downtown Huntington Beach. Last year, local residents found out that Geosciences Analytical Inc.—the same firm that had falsified data at Edison Community Park—had been hired by the city to seek a waiver that would allow them to proceed without extensive soil tests for the project. After the residents found out, the city withdrew that request and hired a new consultant.
It’s hard to say which is stranger: the fact that officials insist that, despite the city’s past life as an oil town, the soil is clean and there’s no connection between oil pollution and the deaths of Trent, Nikki, David and Spencer. Or that although their parents disagree with that assessment, they have no plans to sue.
Instead, they have formed a support group—Support, Teach, Advocate, Nurture and Dedicate (STAND), which has its own website (www.oc-stand.org). Even though some members have other, healthy children, no one in STANDplans to move.
"We don’t want to leave," Olson said. "We want this neighborhood to be safe. We can’t prove our children died because of the environment, but we want an agency to study this. If something can be done to clean the water or soil, then do it."
POSTSCRIPT: Before cleaning water and soil that’s already contaminated, the city might consider making sure that all of its oil wells are stable. On March 18, just days after state officials announced they were about to begin the three-year clean-up of Ascon/Nesi, an inactive oil well at the dumpsite burst a leak and shot a spray of oil 40 feet into the air. A fire crew closed Magnolia Street and set to work scrubbing toxic sludge off roofs, car, sidewalks and streets. Although 360 homes surrounding the dumpsite were coated with oil, officials claimed the leak posed no long-term health hazards to the public.
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