For Head for the Cure fundraisers, it’s a personal thing

In 2004, while Kris Campbell was undergoing radiation, she posed with Harrison (age 9) wearing her new wig and Madeleine (age 7) wearing her wig cap.
In 2004, while Kris Campbell was undergoing radiation, she posed with Harrison (age 9) wearing her new wig and Madeleine (age 7) wearing her wig cap. Submitted photo

It’s a carnival atmosphere on an unusually cool August morning in Overland Park as the 13th annual Head for the Cure 5K draws to a close.

The air smells of funnel cake, and a folk band competes with a radio station van across the parking lot blasting Maroon 5. Balloons arch over the finish line of the race to raise money for brain cancer research. Around 5,000 walkers — from Johnson County to the Northland — decked out in a rainbow of T-shirts bearing the names of their racing teams head for their cars or mill around in the shadow of 40 Corporate Woods to pick up their medals for competing.

Kris Campbell is part of that rainbow, and her teal shirt bears her own name. Team Kris Campbell, made up of 165 friends, family and co-workers of her husband, Harry, has come in second this year in terms of participants and first in terms of donations, raising more than $28,000 for Head for the Cure’s research fund. In fact, their team has been atop the leader board most years since the 5K was first held in 2003.

Later, members of the team will converge on the Campbells’ Overland Park home for a celebratory brunch and ad hoc family reunion.

“This is one of my favorite days of the year,” Kris Campbell says.

She often says she’s blessed to even be here. Campbell was diagnosed 11 1/2 years ago with an astrocytoma, a tumor that lays enmeshed in the part of her brain that controls motor function, making it essentially inoperable. The statistics say 70 percent of those with this type of cancer are gone within a decade. But Campbell is still going strong.

In fact, Harry and Kris Campbell have become vital supporters of brain cancer research both locally and nationwide. They serve on the board of the Head for the Cure Foundation, and Kris Campbell has traveled to help kick-start Head for the Cure 5K events in several other cities. Harry Campbell has supplemented the team’s fundraising by donating all of the proceeds he makes giving speeches and selling a book he wrote on leadership.

Over the last dozen years, their efforts have raised around $460,000.

“They both have unsurpassed energy,” said Matt Anthony, Head for the Cure’s president and founder. “They do it in an exceptional way because they are so matter-of-fact about it. It’s not, ‘Look at me,’ but, ‘Here’s what we’re doing, and we’d like you to be a part of it.’ They have a large community, a lot of people who love them.”

The Campbells are relatively recent arrivals to the Kansas City area. Harry, an Indiana native, moved here in 1992 to work for Sprint while Kris moved up from Florida in 1998 to work at Hallmark. They met while working at a technology firm and were married in March 2003. Harry Campbell had two children from a previous marriage — Harrison, now 21, and Madeleine, 18 — and the couple eventually had a third, Matthew, 7.

During his time at Sprint, Harry Campbell met Matt Anthony, who would later be an original partner of marketing giant VML, and they became close friends.

Anthony’s younger brother, Chris, had been diagnosed in 2000 with a glioblastoma multiforme, a far more aggressive brain tumor that eventually killed him in early 2003. Before his death, Chris Anthony, who had always enjoyed competitive running, suggested to his wife and his older brother that they start an annual race to raise money and awareness.

That turned into the Head for the Cure 5K, which was first held in October 2003. Despite being far less organized than it is today, it attracted around 200 people and raised about $18,000. Among those participants were Harry and Kris Campbell, who sought to support their good friend and his cause.

Four months later, Kris Campbell began having a funny sensation on the top of her left hand. She figured it would just go away, but a few days later the sensation spread up her arm to her elbow. She had also started feeling it in her big toe and up to her knee, as well as in the lower part of her face.

Worried about the possibility of a stroke, she visited an emergency room but was told to take aspirin and maybe see a neurologist.

“At that point, I know now, that stress really increases the symptoms, and I was very stressed by what was going on,” Campbell said. “It was so coordinated. When something happens in your toe and your cheek at the same time, you start to think there’s something behind all that.”

The neurologist performed an MRI, and the next day asked Campbell to come by the office as soon as convenient.

“That’s when I knew we were going to be talking about something significant,” she said.

She was diagnosed with an astrocytoma, which corrupts the star-shaped astrocyte cells that make up the supportive tissue of the brain. Brain tumors are graded I-IV based on how quickly they spread. Most grade I tumors are found in children. Chris Anthony had a fast-moving and highly lethal grade IV. Kris Campbell was told she had a grade II, meaning it was slow-growing — but that wasn’t a comfort.

She had gone to the doctor’s office by herself and now had to figure out how to tell her husband.

“I went after the appointment and sat in my car and had to call someone else first to see if I could even say it,” Kris Campbell said. “I didn’t want to get on the phone with Harry and not be able to communicate what was going on.”

Harry Campbell was called out of a meeting to take the call, and his co-workers said they watched the blood drain from his face as he listened on the phone.

The shock took a while to wear off, and the couple was very gradual in breaking the news to friends and family. Some burst into tears, some hugged them, some sat mute.

The Campbells decided to do their research, although the amount of information about brain cancer on the Internet in 2004 was limited and foreboding. Still, they met with a neurosurgeon, figuring he would say he could remove the tumor and there would be a significant chance it didn’t return. That’s when they received the second round of bad news: They couldn’t take it out. Removing it would leave Kris Campbell paralyzed with very little quality of life. Trips to San Francisco and Houston for second opinions netted the same result.

Instead, they opted for six weeks of radiation therapy in Kansas City. While not curing the tumor, the treatment delays the tumor’s inevitable growth for years.

Harry Campbell said their situation differs from other people facing serious illnesses in that Kris shows few outside symptoms.

The tumor mostly affects her balance, making bike riding and her beloved tennis games difficult. She also must watch her feet when climbing stairs because if her left arm or foot are out of her vision, she often has little coordination.

But she said she stopped letting anguish over the tumor, which the family jokingly calls “Louie,” take over her life long ago.

“I had one day when the shock had worn off, and I felt like a turtle without a shell; I felt very vulnerable and sad,” she said. “I called into work and spent the day watching super-sad movies, crying about other people’s problems. I got to the end of that day and felt I had purged all of that. I thought, if your concern is that you don’t have enough days, don’t spend them like that. That’s the waste of a day.”

In the years that followed, the Head for the Cure 5K took on a new meaning for the Campbells, and they devoted more and more time and effort to support a cause that not only helped a friend and his family.

“I think the simplest statement is it became much more personal,” Harry Campbell said.

A few years into the annual event, Kris Campbell helped develop the “team village,” giving each team its own place to gather and rally. She said she came up with the idea after her own team had grown so large — they typically range between 150 and 250 people — that members would sometimes get lost.

She said she liked the fact that while the 5K events were obviously touching on devastating illnesses, they were framed as celebrations of those who had passed on as well as survivors like herself.

The events also created a community so survivors and those still battling the disease could support each other.

“I went 14 months without meeting another brain tumor survivor after my diagnosis, and it’s a very isolating feeling,” Campbell said. “You feel you’re facing something by yourself with no one else you can relate to. The opportunity to come together and know there’s a whole community of support, that there are other people walking the same journey, is encouraging and hopeful.”

By 2006, Head for the Cure was a nonprofit foundation with a concrete focus, raising seed funds for the Brain Tumor Trials Collaborative. The BTTC is a network of oncologists, researchers and clinicians at 23 U.S. brain cancer centers, including the University of Kansas Cancer Center in Westwood, and serves as an early-stage supporter for clinical trials for treating brain cancer.

While brain cancer is far from rare — the National Cancer Institute estimates 22,850 new brain and nervous system cases a year — it’s dwarfed next to the scope of breast cancer (234,190) and colorectal cancer (132,700). Also, brain cancer has such a high mortality rate and incurable rate that fewer patients live long enough to attract significant funding.

“So grassroots organizations like ours are important both for awareness and for research,” Matt Anthony said. “What we’ve discovered along the way is, in addition to all of that, we’re also an organization that serves to raise optimism and inspire hope in the community of people facing brain cancer. Our events are celebratory, they’re hopeful, they’re energetic, they’re life-affirming.”

Head for the Cure, which has raised more than $5 million since 2003, now sponsors 5K events in 17 cities and is considering adding new types of events, such as 10Ks and bike rides.

Kris Campbell, a Duke University graduate, is planning to travel to North Carolina later this year to help with the second year of a Head for the Cure 5K held in the Raleigh-Durham area.

Harry Campbell is now CEO of Durrie Vision in Overland Park, where the company’s owners support Campbell’s work with Head for the Cure, even paying the registration fees for any employees who want to participate in the 5K. In the meantime, he has turned a side business into a way to raise money for the cause year-round.

On Feb. 6, 2012 — the anniversary of Kris Campbell getting her initial cancer diagnosis — Harry Campbell published a book, “Get-Real Leadership.” It was an extension of his occasional work giving leadership speeches to business groups. Initially, he saw it and the speeches as a way to make a little extra money but eventually chose to donate all gross proceeds of the speeches and net proceeds of book sales to Head for the Cure.

“It was a very peaceful decision I came to. I didn’t want to become a speaker for a living,” he said. “I love doing it. I love talking about leadership and public speaking, so it all came together.”

At last count, he estimates he’s done more than 80 speeches in three and a half years and sold about 4,000 copies of the book. He’s also working on a second book about business culture, which he said should be out next February.

In his speeches, he frequently tells his listeners about the importance of optimism, having a no-quit attitude and a hatred for losing. On stage, he doesn’t directly link those qualities to his cancer work, but sitting in his living room they show in his face as he explains what drives him to continue.

“To find a cure,” he said. “If enough attention and money is put into it, I’m absolutely convinced that can happen.”

Kris Campbell shares that dedication, knowing that she is still able to attend the annual races, still able to lend her voice and her story to her advocacy even as many of the names on the colored T-shirts at the 5K — Team Little Owl, Lisa’s Legacy, Dancing for Terry — are memories.

“I felt very shy about it at first,” she said of her advocacy. “I always felt like I was asking people to support just me. But I realized I had an obligation as a survivor who is still healthy and can do these things to spread the word, raise money, raise awareness. And I feel very blessed to do that.”