Friday, November 4, 2011

Neuroblastoma Awareness: Kids with cancer get innovative treatments at new clinic funded by gift to DeVos Children's Hospital

GRAND RAPIDS -- For 8-year-old Ryan Regan, the checkup at the cancer clinic at DeVos Children's Hospital was fun and games.

He laughed when the doctor tickled his belly, showed off a photo of himself in a Superman costume and wandered down the hall to play with friends.

His mother, Cathy Regan, was amazed at how far he had come since he began treatment for neuroblastoma at a pediatric cancer clinic at Helen DeVos Children's Hospital.

"It's a little miracle," said Regan, who lives in Macomb Township in Southeast Michigan.

A grant announced today (Thursday) will provide funding that will allow the clinic to treat more children like Ryan.

The donation of an undisclosed amount of money from Dick and Ethie Haworth establishes the Haworth Family Pediatric Oncology Innovative Therapeutics Clinic, which uses a personalized medicine approach to treating neuroblastoma and other childhood cancers. The director of the clinic, Dr. Giselle Sholler, is also a researcher at Van Andel Institute.

Through the clinic and the institute, the genetic makeup of tumors is analyzed in an effort to determine the best medications to block the cancer. Doctors and researchers in an 11-hospital research consortium are involved in analyzing the test results and choosing the treatment.

Regan said she brought Ryan to the DeVos Children's clinic after doctors at Memorial Sloan-Kettering Cancer Center in New York said they had no more treatment options for him.

Based on the analysis of Ryan's tumor, which formed in his belly and has spread to his liver, Sholler began treating him with three chemotherapy drugs in mid-September. At that point, Ryan weighed only 36 pounds.

"He couldn't walk," his mother said. "He was vomiting. You couldn't pick him up, his liver was so distended. He was on pain meds around the clock."

Ryan's condition improved after the first treatment. In six weeks, he has gained eight pounds -- and lots of energy. One of the goals of the clinic is to use medications with few side effects, so the children can have good quality of life, Sholler said.

That benefit is much appreciated by Regan. Her son has battled cancer for nearly half his life. At 21 months, he was diagnosed with neuroblastoma, a tumor of the peripheral nervous system that typically strikes children 6 and under. The cancer went into remission six months later, but resurfaced when Ryan was 5.

At times, he was treated with high doses of chemotherapy that required three weeks in the hospital for recovery., Regan said.

"We have to drive here, but it's worth it," she said. "His quality of life is awesome."

The clinic is attracting patients from throughout the country and Canada, said Dr. James Fahner, head of pediatric oncology at the hospital. Six children have been treated so far and, eventually, Fahner expects a half-dozen children a week at the clinic.

The clinic's initial focus is on children whose disease has nor responded to therapy, whose cancer has recurred and those whose cancer is so high-risk at diagnosis that standard treatments are not likely to work.

The Haworths said in a statement they made the donation because they believe in the work of the children's cancer program.

"We want to be an encouragement to Dr. Sholler in advancing the science and we look forward to learning about the results of this new initiative," Dick Haworth said.


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