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The Accidental Activist

Last summer, after Andrea Thome and her neighbors were plunged into a public health nightmare, she faced a choice: Wait for something to change, or bring the fight.

Above:Thome at her house in Burr Ridge, one of several western suburbs facing elevated cancer risks that many residents blame on emissions from Sterigenics Photo: Lisa Predko

When she awoke, before midnight, she had been dreaming: about her mother, the once-vibrant woman who had died four years earlier of liver and kidney disease. About her father, who might have died himself had a brain tumor not been discovered in time.

Andrea Thome wasn’t prone to nightmares, but there was good reason for her troubled sleep of late. A month earlier, at a community forum held in the western suburb of Darien, the next town over from hers, local officials and representatives from the Environmental Protection Agency had stunned residents with the results of a study about a company in their midst: Sterigenics. The EPA told the audience of several hundred that the hospital services firm’s two buildings in the neighboring village of Willowbrook had for decades been emitting a known carcinogen called ethylene oxide.

Those buildings sit not off in some remote industrial park but along a busy commercial strip, within a mile or so from four schools, a daycare center, a park, community ball fields, a Target-anchored shopping center, restaurants, banks, big-box stores, and the homes of some 20,000 people, including Thome’s in Burr Ridge.

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The study referred to a roughly 13-square-mile area encompassing parts of Burr Ridge, Willowbrook, Darien, and Hinsdale where cancer risks are nine times as high as the national average — among the worst in the country.

Walking out of that meeting, Thome felt sick with worry. Could this account for her mother’s death? Her father’s brain tumor? What about her daughter, Lila? And her son, Landon, who played youth baseball downwind from the plant? And what about her friends, her neighbors? Were they safe? What should her family do? Would they have to move?

And so, for Thome, came the nightmares.

Having slipped out of bed that night of September 19, 2018, simultaneously exhausted and keyed up, she flipped open her laptop, signed on to her blog, and began typing:

It’s almost midnight, and sleep won’t come. My mind is racing. You see, our community is in crisis.

A real crisis.

We’ve been being poisoned by a company called Sterigenics, and it’s been happening without our knowledge since the mid-1980’s. Our cancer rates are disturbingly higher than the national average. … They burn and emit twenty-four-hours a day, seven days a week. …

They are less than one mile from where we’re reluctant to send our son to play his almost-daily fall baseball and flag football games, depending on which way the wind blows. …

My mom died in October of 2014 after an excruciating battle with liver and kidney disease. She didn’t drink. She didn’t smoke. She didn’t do drugs. She was a life-long vegetarian. She meditated daily. …

My dad who was already an avid exerciser and walker, as a way to process his grief after losing his wife of forty-eight years, started doubling his daily load to eight miles a day. Friends on the way to shop for organic food at the Whole Foods near his house … noticed him, pumping his arms, looking happy and healthy on his morning treks.

What’s he up to these days?

Oh, he’s trying to reclaim his life after he almost lost it to a huge brain tumor. …

The time for being quiet is over. It’s time to act.

At 2:30 a.m., too tired and emotionally spent to check her spelling and grammar, she posted the message and crawled back under the covers. For the first time in weeks, she fell asleep right away. She did not dream of her parents.

 
Thome with her husband, Jim, a former White Sox slugger, and her parents, Jerry and Sharon Pacione, circa 2004
Thome with her husband, Jim, a former White Sox slugger, and her parents, Jerry and Sharon Pacione, circa 2004, a decade before Sharon’s death from kidney and liver disease Photo: Courtesy of Andrea Thome

Set on two handsomely landscaped acres, the English manor–style home that Thome shares with her husband and children is fittingly splendid for a couple who have reached the height of their careers. At 47, Andrea has made a transition from a major-market TV sports broadcaster to a novelist. Thome’s 48-year-old husband, you know. Jim — as in Jim Thome, the Hall of Fame baseball player who spent four seasons with the White Sox — now works in the team’s front office and as an analyst for MLB Network.

They met in 1995, when Andrea was a reporter in Cleveland and Jim was belting homers for the Indians, and married three years later. In 2006, after Jim was traded from the Philadelphia Phillies to the Sox, they moved to Hinsdale. Six years later, they moved to nearby Burr Ridge.

The couple fell in love with the town of 11,000, which borders one of the wealthiest municipalities in Illinois but has enough modestly priced homes to draw middle-class families, too. Good schools, tree-lined streets, expansive parks — Andrea says they found all of those factors deeply appealing. Best of all, Andrea’s parents lived barely a mile away, in Willowbrook.

“We loved how people were outdoors,” says Jim. “We’re the kind of people who want to be outside, to be able to open our windows. In the spring, you should be airing your home, not shutting it down.”

Indeed, the moment their son, Landon, now 11, was old enough, he joined spring and summer baseball leagues, and both he and his sister, Lila, 16, spent several days a week at nearby Harvester Park, a gathering spot for kids and their parents.

When Thome’s mother, Sharon, got sick, in 2011 at the age of 68, it came as a shock. A poet, writer, dedicated vegetarian, and card-carrying member of an activist group called Grandmothers for Peace, she’d been the picture of vigor and health. After she died, in 2014, Thome’s father, Jerry Pacione, ramped up his own exercise routine. “He rode his bike every single day,” Thome says. “He was always outside — in his garden, in the backyard, visiting his neighbors, bringing peaches.”

In January 2017, Pacione, who is 74, began noticing vision problems. “I started getting floaters in my right eye,” he recalls, referring to the dark pinpricks that can dart back and forth across the field of sight. He didn’t think much of it, and neither did Thome. His doctor suggested cataract surgery, and Pacione agreed to it, but the procedure didn’t seem to help much.

In June of that year, Pacione fell off his bike, breaking two ribs. He put it down to simply losing his balance, but Thome was growing increasingly worried. By late summer, her dad was complaining that his vision had worsened considerably. “It was like looking through thick smoke,” Pacione recalls. More concerning still were the headaches. Like most people, he’d often had the occasional take-two-Tylenol variety, but these were something else altogether. “It felt like somebody was putting a knife in the top of my forehead and pulling it straight down to my eye. I can handle pain, but I went, ‘Wow.’ ”

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Pacione saw several ophthalmologists, but it wasn’t until December 20, Thome’s birthday, that one of the eye doctors raised an alarm. “I don’t really see anything wrong with your eyes,” Pacione recalls him saying. “But I do recommend you get an MRI.”

Two days later, Thome drove her father to get the scan and delivered a copy of the test results to her own doctor that afternoon for a second opinion. “I had just dropped my dad off and the phone rings,” Thome recalls. “It was my doctor. He said, ‘Andrea, go get your dad and meet me at the ER. It’s a tumor.’ ”

Pacione had a craniopharyngioma, a rare type of brain tumor that afflicts the pituitary gland and other brain tissue. Such masses occur most commonly in children but can develop at any age. The tumor had been pressing on his optic nerve.

Two days after the diagnosis, on Christmas Eve 2017, Pacione underwent an eight-hour procedure to remove the mass. The surgery was a success and his eyesight improved, but Pacione has to be checked every six months. Such tumors, he was told, “grow like crabgrass.”

 

The two low-slung industrial buildings are easy to miss as you’re cruising down Quincy Street in Willowbrook. Set on smartly manicured grounds just down the road from a Denny’s and a Target, the structures have brown brick façades, a glass-doored reception area, and a couple of truck bays — no towering smokestacks, no massive ventilation towers. Somewhat ironically, the work that goes on at Sterigenics is aimed at preventing health problems. In the facility’s sterilization chambers, medical equipment is treated with a gas mixture containing ethylene oxide, a toxic compound that’s very effective at destroying microbes. After the sterilization process, the gas mixture is pumped into scrubber rooms that ostensibly separate out the poisonous components before the exhaust is vented outside.

What the EPA discovered last May upon conducting air quality tests around the facility is that the atmospheric levels of ethylene oxide were considerably higher than previously reported. In fact, the concentration of the compound in the surrounding census tract was high enough to elevate the estimated cancer risk to 300 cases for every million people — a level that puts the Willowbrook corridor on a par with Louisiana’s so-called Cancer Alley, a stretch of the Mississippi River valley where chemical plants have been releasing toxic substances into the air for years.

The EPA notified municipal and county officials of the air test results and associated cancer risks in August. A community meeting, organized by residents with the help of local elected officials, followed soon after. As Thome recalls, it quickly grew contentious. “It’s funny because thinking back, I don’t know what made me go to that meeting,” she says. She remembers the attendees starting to grumble when they realized that the EPA officials and representatives of Sterigenics had set aside only a few minutes for questions and had limited those questions to ones submitted in advance. “Finally, somebody wanted to ask a question and they said, ‘Ma’am, you’re going to have to wait until everyone’s spoken to ask a question.’

“That triggered something in me,” Thome says. “I walked right over and stood at the podium and said, ‘Let’s form a line, because if we don’t, they’re not going to listen to us.’ ”

When one of the officials repeated that they weren’t taking new questions, Thome said, “Well, we’re here to ask you questions. We’re here, and we want answers.” The meeting became more disorderly, but Thome felt galvanized. “I think that’s the moment everyone realized we’re in this together. Like, Uh-oh, this is a big deal.”

Representatives of Sterigenics responded to community concerns with statements disputing the reported amounts of toxins being released and declaring that, in any case, the facility was operating well within the emissions parameters for ethylene oxide set by the EPA. Later, when I asked Sterigenics to elaborate on its position, spokeswoman Kristin Gibbs emailed me a statement that largely reiterated an open letter published on the company’s website: “We follow rigorous safety protocols, operate in compliance with health and safety regulations and have continually challenged ourselves to improve and upgrade our operations to do better than what the regulations require. The fact that flawed data was used and measured against a controversial standard has created needless fear and worry about safety in the community of Willowbrook. Ethylene oxide (EO) is produced by many natural and man-made sources and is in the air all around us. Recent air sample tests across the Chicago area show that the ambient air levels of EO around Willowbrook are consistent with levels found across the Chicago area.”

In a development that seemed to lend credence to the company’s position, in late November 2018 the EPA announced that truck exhaust that can read as ethylene oxide may have affected the air samples taken around the Sterigenics buildings. Subsequent testing, however, found that those fumes, called trans-2-butene, were not present. What’s more, in early December the EPA released results of yet another round of air testing in Willowbrook. The tests actually showed spikes in ethylene oxide levels near the town hall that exceeded previous readings, though simultaneous tests at other nearby locations did not return detectable levels of the compound.

Residents acknowledge that Sterigenics has indeed met EPA and Occupational Safety and Health Administration limits on ethylene oxide emissions. But they point out that those emissions guidelines are widely considered to be outdated. (Ethylene oxide was formally classified as a known human carcinogen only in 2000.) “The standards haven’t caught up with the science,” says Neringa Zymancius, a Darien resident who has become a leader of the protests against Sterigenics. For example, just last year a regulatory arm of the European Union found that even small amounts of ethylene oxide can cause endocrine disruption. Such disruptions can increase cancer risks and cause disturbances in the immune system, according to the EPA’s website. Residents have also cited studies claiming that no amount of ethylene oxide in the atmosphere is safe and have demanded that Sterigenics reduce its output to zero or be forced to close. At the very least, they say, the plant should cease operations until more is known.

In mid-February, Governor Pritzker, in response the outcry, ordered the Willowbrook Sterigenics plant to be closed pending analysis of further air sampling to be conducted over the next few months. In a statement, the company vowed to sue. “Unilaterally preventing a business that is operating in compliance with all state permits and regulations from carrying out its vital function sets a dangerous precedent,” the statement read.

The closure represented at least a temporary vindication of efforts that had begun to take form in the nerve-racking days after that first community meeting last summer, as area residents formed a Facebook group called Stop Sterigenics and started other organizing efforts. But the residents of Darien, Hinsdale, Burr Ridge, and Willowbrook had not yet found a voice that gave expression, on a personal and visceral level, to their growing sense of outrage — and to the ghastly possibility that the very air they were breathing may have been sickening and in some cases killing their loved ones.

 
Sterigenics protest
Neringa Zymancius (with bullhorn) leading protesters outside the Sterigenics headquarters in Oak Brook in September Photo: Mark Black/For the Chicago Tribune

Bleary-eyed from her interrupted sleep, Thome woke up on the morning of September 20 and, as she usually does, checked her email and social media feeds. She had almost forgotten about her blog screed. “I had written it in the middle of the night more as catharsis than anything.” But in the few hours since the post had gone up, hundreds of people had read it and shared it, many of them describing instances of diseases in families that had no history of them.

“There were tons of responses,” she says. “People were like, ‘Oh my God, my mom was sick.’ ‘Oh my God, my parents.’ ‘Oh my God, my neighbors. Eight out of 10 people on our street have had cancer.’ Or ‘I had no idea what you were going through.’ And I was like, Whoa.”

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Thome’s impassioned, acid-tinged post, with its unabashed reference to her mother’s death and her father’s cancer, was unlocking something in the growing number of people who were reading it. Suddenly illnesses that had been previously attributed to chance misfortune seemed to be part of a terrifying pattern.

Among those who reached out to Thome after the blog post was close friend Dawn Wood, who lived in Burr Ridge from 1983 to 2012. “I didn’t know much about the Sterigenics situation until Andrea posted about it,” she says. “But it made me think. My dad, who lived in Burr Ridge and Hinsdale until 2012, passed away five years ago from non-Hodgkin’s lymphoma.”

Just as ominous, says Wood, are her own health woes. “I’ve had 10 pregnancies and I have three children. So I lost six [to miscarriage] and then had one child who was born with a fluke kind of birth defect that was not able to be fixed. You start to wonder: Was I over at the park by Sterigenics during the moment in time when that part of the baby was being formed?”

In the weeks after she posted her message, Thome had numerous conversations, some going late into the night, with Wood and other friends and neighbors. They’d compare notes on family members who’d gotten sick and worry out loud about what to do next. Would they have to move? Would they even be able to sell their homes?

“I’ve got three kids, 12, 9, and 7,” says Wood. “You want your kids to be outside rather than on an iPad all day, so you enroll them in Little League, but you wonder, Am I actually doing more harm to them? It’s scary because part of the thing is, you can’t see it or smell it. But it’s in the back of my mind: Am I breathing my doom right now?”

Two other neighbors, Sam and Shannon Murante, are good friends with the Thomes because their sons played on the same baseball team. “Every time we see each other, this is the discussion,” says Sam, a trader and real estate developer. “It has consumed our lives for the last six months.”

Sam’s mother also lived in the area. “She died of pancreatic cancer in 2016,” he says. “She didn’t smoke. She didn’t drink often. That’s now in the back of my mind too.”

Anecdotal evidence notwithstanding, a cancer cluster has not been statistically confirmed in the area. But Peter Infante, an epidemiologist who formerly served as director of OSHA, said that during his tenure researchers found a number of types of cancer associated with occupational exposure to ethylene oxide, which suggests that residents could suffer similar illnesses from prolonged inhalation of the compound. The only way to confirm that, he says, would be to determine community residential exposure, which would presumably entail a long-term study. Even if one gets under way, it is unlikely that residents will be content to wait quietly for the results.

Of all the messages Thome received just after her blog post, one stands out in her mind: “An advocate is born,” it read. “You were given your writing talents and voice for something so much bigger than you could have ever known years ago.”

Certainly, in the weeks after her post, Thome didn’t shy away from leveraging her public profile to speak out on the issue, giving interviews to WGN Radio and local TV news shows, and she stepped forward at protests. Indeed, Thome was becoming the public face of the new movement — a role that didn’t sit well with her. She feared being seen as a spotlight chaser or a celebrity wife adopting a vanity cause. More than anything, she was reluctant to drag her family into a public fight. Her father, for one, was initially uncomfortable having his medical ordeal shared. “He’s a private person,” she says, “and I put his story out there without letting him know when I really should have.”

As for Thome’s husband, he, too, was concerned about drawing attention to his family but has since pledged his full support. “I think it’s great that she has spoken out on all of this and put herself out there,” he says. “I’m her fan, and I’m her fan because of what she’s doing.”

Within weeks of that initial community meeting, a flurry of individual and class-action lawsuits were filed by residents against Sterigenics. In October, the Illinois attorney general and the DuPage County state’s attorney, Robert Berlin, filed a 21-page complaint against Sterigenics alleging that it “emitted a dangerous, toxic chemical in the air, putting the public’s health at risk.” The famed environmental activist Erin Brockovich has also gotten involved, writing on Facebook, “Sterigenics has harmed people and this needs to stop.” Residents and other activists have been providing her with information on cancer rates near the plant.

And so the fight continues. In the face of the growing number of legal actions and increased publicity, Thome has stepped back. She still attends the occasional protest, but mostly she’s tracking developments through the media.

 
The Sterigenics facility
The Sterigenics facility in Willowbrook sits on a busy commercial strip, about a mile from a shopping center, several schools, and the homes of some 20,000 people. Photo: John J. Kim/Chicago Tribune

One afternoon, Thome takes me for a drive around Burr Ridge and Willowbrook, starting at the Sterigenics buildings. It’s the middle of the school day and the road is quiet, but Thome tells me that buses full of kids pass by in the mornings and afternoons.

Right up the street, she points out one of the biggest areas of concern: a shopping center packed with restaurants and markets, all of them walking distance from the Sterigenics facility. “People are avoiding these businesses,” she says.

Our next stop is Harvester Park. A sweeping expanse of green dotted with baseball diamonds and crisscrossed by trails and wetland areas, it is peaceful and pretty in the middle of the day, with a cool breeze blowing from the northwest — “right toward Hinsdale, right toward the park where my son plays,” says Thome, staring in the direction of the Sterigenics buildings upwind. He is a promising athlete, she says. “He bats left and throws right, just like his dad.”

Thome swings around and drives for a few blocks, then eases her Jeep Wrangler into a park adjacent to Gower Middle School. Gazing at the bucolic suburban scene, she says, “People are worried about growing vegetables now. They’re worried about their compost heaps.”

She mentions that she and her husband have considered moving into an apartment in Chicago during the summer months, at least until more answers are forthcoming. It would be an extreme measure and is anathema to her for a variety of reasons: “Yes, we have the financial ability to move, but why should we have to?” She also worries she would be abandoning her neighbors. “We feel like it’s worth staying and fighting.”

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Before we part ways, she wants to make one last stop: her father’s house in Willowbrook. The houses here are tidy and modest — mostly three-bedrooms — arrayed along winding streets and cul-de-sacs and backing up to ponds and streams. Just beyond her father’s back door, a path runs along the perfectly manicured banks of Flagg Creek and arcs over a stone bridge.

Her father loved walking over that bridge, Thome says. But not anymore. These days he stays inside, windows closed, awaiting his next MRI.

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