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It takes a few good friends to help young patient beat cancer

It takes a few good friends to help young patient beat rare cancer
Patricia Kilday Har, Houston Chronicle
Published 2:59 pm, Tuesday, April 23, 2013

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  • Jessica Schwausch has a rare form of stomach cancer. The M.D. Anderson patient hopes to go to Philadelphia to participate in a clinical trial with help from the Kelly sisters. Photo: Karen Warren, Staff / © 2013 Houston Chronicle
    Jessica Schwausch has a rare form of stomach cancer. The M.D. Anderson patient hopes to go to Philadelphia to participate in a clinical trial with help from the Kelly sisters. Photo: Karen Warren, Staff

 

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When Jessica Schwausch started experiencing intermittent dizzy spells two years ago, it didn't cross her mind that she might have serious health issues. Like most 18-year-olds, she was too busy enjoying life to imagine a darker explanation.

Even her first trip to Ben Taub's emergency room provided a diagnosis that wasn't particularly scary: ulcers. A blood transfusion worked wonders, and she was on her way.

That changed on Father's Day 2010. She awakened in the middle of the night nauseous and throwing up blood. An ambulance rushed her to Ben Taub; days later, tests discovered a tumor in her stomach, a rare type of cancer known as gastrointestinal stromal tumor, or GIST. Over the next two years, the bleeding tumor would require her to undergo 95 blood transfusions.

Since her diagnosis, Schwausch's life has been a roller coaster of good luck and bad. She began treatment at M.D. Anderson two weeks after the tumor was discovered, but the cancer has been found in her liver and lungs. Standard chemotherapy worked - until it didn't. Her doctor enrolled her in a clinical trial in Philadelphia to access a promising new therapy, but participation in the trial and travel expenses will cost $25,000.

Throughout it all, Schwausch has maintained an equilibrium that astonishes her health-care providers. "I have to be grateful," she told me, after describing painful blisters and other side effects of chemotherapy. "I get wonderful care at M.D. Anderson. I just keep faith in God that there's a reason behind all this."

That courageous attitude won over Kristen Carter, an M.D. Anderson physician assistant. Carter and Schwausch have become such good friends that Carter gives status updates on Schwausch to her mom, Patti Kelly Berkstresser. Recently, she confided that the potentially life-saving clinical trial carried prohibitive costs; Berkstresser suggested a fundraiser. "Everybody was just on board," Carter said.

By "everybody," Carter meant her mom and her mother's four sisters - known collectively as the Kelly sisters, since Kelly is their shared maiden name. The five women immediately organized a May 11 event to cover Schwausch's clinical trial expenses.

Trials offer hope

In the world of cancer, the term "clinical trial" offers promise, but it's also shrouded in mystery and frustration. As its name suggests, a trial attempts to sort out the truth about a new treatment. Is it safe? Does it work? Does it fail to work under some circumstances?

To determine those answers, institutions conducting research must carefully calibrate who receives the drug treatment. Institutional review boards determine strict parameters for participation so that the data collected can be trusted.

"There's very specific criteria for who can get into a clinical trial," explained Margaret Kripke, chief scientific officer of the Cancer Prevention and Research Institute of Texas. Very often, she said, "they'll exclude people with other health conditions, like diabetes."

For that reason, "Finding a clinical trial isn't always so easy," she noted.

Typically, insurance companies don't cover participation in a clinical trial, since treatment is, by its nature, experimental.

For many people, the experimental nature doesn't matter. "A lot of times, they've failed all other forms of therapy," Kripke said.

The world of cancer treatment is so complex that Livestrong, a cancer-patient advocacy organization, employs "navigators" whose primary job is helping cancer patients access care, including clinical trials.

Livestrong navigator Abby Milloy said that once a clinical trial is found, it is very common for patients to have to foot the bill for large expenses for travel and lodging. Part of her job is to help patients find assistance through foundations and other nonprofits.

Fundraising from family and friends is very common, she said.

"If you don't have family and a pretty established social network, it becomes much, much harder," she said. "If all those factors don't line up," patients have a difficult time following through with a clinical trial, she said.

Milloy advises cancer patients to begin researching clinical trials as soon as they are diagnosed. Many people mistakenly fear that some patients receive placebo treatments in clinical trials, which she said is untrue: Everyone receives at least the accepted standard of care.

Helping Jessica

I've known the Kelly sisters - Kathy, Patti, Sue, Cary and Annie - since childhood. Growing up in Bellaire, the Kelly and Kilday girls were inseparable. It was my good luck to have a smart, no-nonsense childhood friend like Patti Kelly Berkstresser. She had the knack for figuring out difficult tasks faster than her peers and was gracious about sharing her insight.

On May 11, they'll gather at Sue Kelly Berry's house in Bellaire to enjoy "small bites" donated from Houston restaurants and celebrate Schwausch's life credo, borrowed from her favorite Dierks Bentley song: "Free and Easy, Down the Road I Go." (For information go to thejessicafund.com.)

As the folks at Livestrong know, everything has to line up just right for cancer patients to beat this disease. That includes not just scientific advancements, but personal resilience and a strong support system. It's often said that you make you own luck. Schwauch's grace and courage earned her the good fortune of counting the Kelly sisters as friends who will make sure she gets to Philadelphia.