Surgery at St. Jude Inspires Hope, Frustration

Four-year-old Brandon Brauns returned home July 4 after spending two months in Memphis, Tenn. with his parents, Jeff and Kris Brauns of Bothell.

Brandon took several rolls of photos, rode a tricycle and had a life-threatening tumor removed from his brain.

The Braunses took their son to St. Jude Children's Research Hospital in Memphis, where doctors have great success with the rare type tumor Brandon has. After treatment there, his prognosis is good. Neurosurgeons removed nearly all of the tumor and Brandon's condition is rapidly improving.

"I think by September, he'll be eating again," Kris said.
Kris and Jeff were not so hopeful after Brandon's first surgery at Children's Hospital in Seattle on Feb. 10. Doctors could only remove about half the tumor. Afterward, they started a chemotherapy program designed to prepare him for a second surgery. But doctors at Children's would not perform a second surgery.
Group Health said they would not pay for Brandon's surgery anywhere else.

Brandon began having headaches in December 2002. In January, he vomited every morning. On Feb. 4, he vomited all day and went to the hospital for tests. On Feb. 6, Neurosurgeon Dr. Anthony Avellino told the family Brandon had a tumor in a "high-rent part of the brain."

The first surgery took 11 hours. Avellino removed just over half the tumor and had it tested on Feb. 10. Then came the diagnosis of ependymoma, which affects about 6 percent of children with brain tumors. He started chemotherapy right away.

Dr. Thomas Merchant, a radiation oncologist at St. Jude, developed the chemotherapy program to prepare for a second surgery they felt they couldn't perform. Avellino and oncologist Dr. Russell Geyer supported the Braunses' decision to go to St. Jude.

St. Jude is a unique hospital. Not only are their success rates high, but the atmosphere more closely resembles a playroom than a hospital.

"You've got all these kids running around with tubes and masks and no hair and eye patches," Kris said. "But unless they're on some major chemo and feel terrible, for the most part, they're pretty happy."

Merchant and Drs. Rick Boop and Robert Sanford, neurologists at Le Bonheur, a nearby children's medical center, were confident they could treat the tumor. Brandon was in experienced hands.

"This was one of the best nights of our lives in the past six months," Kris recalled. "They called and said this was a pretty straightforward case."

By the time they operated on Brandon on May 2, Group Health had denied the Braunses coverage twice. The first time, they said it was because St. Jude was out of their network. To appeal, the family sent results of a completed study conducted by Merchant. The second denial reasoned that Brandon was part of the study and therefore not covered.

The surgery lasted 6 hours. Boop and Sanford removed all but a tiny piece of tumor hiding on a major blood vessel, too dangerous to remove. After radiation, there is only a 10% chance it will grow again.

Jeff remembered the surgeons: "Sanford, who's probably 50-something, walks in, and, kind of like Clint Eastwood, he goes, 'Oh, tumor's out.'"

The Braunses are appealing Group Health's denial a third time, this time to an independent review organization. Third-party appraisal is guaranteed to those with health coverage in Washington since passage of the Patient Bill of Rights in 2000.

"Our main argument is: You denied out of network, fine. You denied it because it's investigational, that's wrong," Kris said.

An advocate told them: "In good faith, this large HMO should pay for that surgery."

They aren't asking Group Health to cover treatment that could have been done at home. The family would need to go between facilities in downtown Seattle and at the University of Washington.

"[At St. Jude,] this was done at the same building, every day," Jeff said.

Thanks to an outpouring of support from friends and family, the Braunses were able to take off work and stay with Brandon in Memphis for two months. Several fundraisers helped with living expenses. When a family friend died, her husband asked that donations be sent to Brandon's family in lieu of flowers.

Kris, a self-described "workaholic," said Brandon's illness put everything into perspective.

"I'm convinced God was preparing us for this," she said. "People get so busy, they go through life not slowing down to notice ... When something happens like this, people do slow down."

Brandon, however, is quickly returning to life as a normal 4-year-old. He was already riding his tricycle and took a spill in the driveway.

Looking through the photo album of his trip, Brandon explained several details in his quiet but determined voice. One photo showed his central line port, which was there "so I don't have to get stuck in my arm."

"There's my stinky foot," he said of another picture. He brought the photo close to his mother's face and challenged, "Mom! Smell my foot."

(for News Lab/The Bothell-Kenmore Reporter)