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Hospice not available for Triangle's terminally ill children

The Triangle is renowned for its cancer research and treatment, but health advocates say there is a serious lapse in care for the youngest terminally ill patients living in the area.

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DURHAM, N.C. — About 1 in 285 children in the U.S. will be diagnosed with cancer before their 20th birthday, according to the American Childhood Cancer Organization.

The Triangle is renowned for its cancer research and treatment, but health advocates say there is a serious lapse in care for the youngest terminally ill patients living in the area.

Pediatric hospice care is available in Greensboro, Burlington, Asheville and Asheboro, but not in the Triangle. Diane Moore has been fighting for hospice care in the area ever since losing her 8-year-old daughter Colleen to bone cancer seven years ago.

“You would think in Wake County, our state capitol, that we would have this,” she said.

Moore says her daughter suffered because of the lack of hospice help.

“My daughter was filled with a lot of fear during the last 48 hours of her life. She had oxygen hunger, and she was terrified,” Moore said. “To go through that oxygen hunger, that could have been avoided if she was given the right amount of morphine. I wish that she didn’t have to go through that.”

Elissa Gaus asked about hospice care for her 10-year-old son Micah, who was diagnosed with brain cancer at 4 ½, after doctors said there was nothing more they could do to help him. She was surprised to learn hospice does not serve children in Wake County, where they live.

“This brain tumor, the latest one, is growing rapidly and is causing seizures and more discomfort than all of the other ones he’s had,” Gaus said. “I’m honestly not sure what the next step from here is.”

Tim Rogers, CEO and president of the Association for Home & Hospice Care of North Carolina, says, on average, less than 1 percent of hospice patients in North Carolina are children.

“I believe that the quantity of need for this service has not presented itself,” he said. “But, still, in a society where the need is one, it’s a need.”

Transitions LifeCare, formerly known as Hospice of Wake County, will soon be the first to serve terminally ill children in the Triangle. It plans to launch a program in September, but it will be very limited. Funding will only cover the care for 10 children in the first year.

“I just wish it were available now,” Gaus said. “You would think that there would be these services available to make it easy on us, because at the end of life you shouldn’t have to be dealing with this.”

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