Changing the Outcome

Groundbreaking research and a comprehensive model of care enable Seattle Children’s to improve outcomes for children with brain tumors

HemOnc patient Brandon Bliss receives anti-nausea medicine through his Port-a-Cath from his nurse

Brandon Bliss, 10, receives anti-nausea medicine through his Port-a-Cath before his chemotherapy infusion begins. He and at least one of his parents traveled 1,400 miles from their home in Conrad, Montana, so Brandon can be treated at Seattle Children’s for his brain tumor.

Brain tumor. It’s hard to imagine two more chilling words. Aaron and Janae Bliss can’t.

After complaining of headaches, their son Brandon was diagnosed with a brain tumor in 2006. “I couldn’t believe it,” says his father. “The first few days were like walking around in a bad dream. You just kept hoping you’d wake up.”

The good news – relatively speaking – was that the tumor was benign, not malignant. Known as a pilocytic astrocytoma, it would not spread to other parts of Brandon’s body. It would, however, continue to grow and put more and more pressure on his brain.

Doctors at Great Falls Hospital, where Brandon was diagnosed, laid out the family’s options and told them where they could find the best possible care. So about twice a month, Brandon and at least one of his parents made the 1,400-mile round trip from their Montana wheat farm to Seattle Children’s for Brandon’s chemotherapy treatments – treatments Seattle Children’s helped pioneer a decade ago.

By staying a week at a time, Brandon was able to receive two infusions per trip. Sometimes the family flew. Other times they drove. “If it was even half that far, that would be great,” says Brandon’s father. “But in the grand scheme of things, it was time well spent because it meant our son received the care he needed to get well.”

Making Steady Progress

Dr. Russell Geyer

Brain tumor specialist Dr. Russell Geyer confers on a case.

Brain tumors are the second most common form of childhood cancer in the United States, with 2,200 new cases diagnosed every year. While they remain terribly frightening, brain tumors are not as deadly as they once were, and survival rates have climbed to better than 50%.

“Many children with brain tumors are long-term survivors and do very well,” says oncologist Dr. Russell Geyer, director of Seattle Children’s Division of Hematology/Oncology.

Children’s treats 60 to 80 brain tumor patients a year. That experience enables caregivers to better predict, identify and respond to the long-term needs of patients.

A host of pediatric cancer specialists work together to devise and deliver the best possible course of treatment for each patient. “Everyone involved is truly an expert,” says Geyer.

Standing beside the oncologists, neurosurgeons, radiologists and nurses who treat and study the disease are physical therapists, social workers, dietitians, child-life specialists and other caregivers. They help children and their families meet the demands of treatment and move forward with their lives.

“One of the biggest things we have to offer is our multidisciplinary approach,” says Corrine Hoeppner, ARNP, a pediatric nurse practitioner. “It takes a village to raise a child, but it takes a metropolis to raise a sick child.”

At Seattle Children’s, brain tumor patients and their families are welcomed into a support system they can call on long after they’re discharged. Hoeppner recently helped the mother of a patient who finished treatment 12 years ago find a dentist who could address the severe dental problems her now 18-year-old son developed due to radiation treatment.

“I have as many contacts with patients and families several years after treatment as with those who are just starting,” says Hoeppner. “It’s a continuum that never ends – and I don’t want it to.”