Chattanooga: Center to help with pediatric cancer’s toll

For Middle Valley single mother Robin Norris, it isn’t just her 3-year-old son’s cancer that breaks her heart. It’s the uncertainty over how the chemotherapy will affect his development down the road; the loss of her career and, with it, her income stream; and the unrelenting guilt that she is neglecting her 6-year-old daughter Karleigh.

“It kills me,” she said.

She quit her job as a chiropractor’s assistant after her son, Nash, started chemotherapy for his spinal cord tumor at just 15 months old.

“You don’t want to trust anybody else with your child (at day care) because he’s sick and you’re not guaranteed tomorrow,” she said. “Your family is a great support system, but nobody knows what you’re going through. ... You really don’t want to talk to anybody.”

Survival rates for pediatric cancer have reached 80 percent thanks to more effective — yet intensely aggressive — treatments, experts say. But the related cognitive and physical tolls, as well as the emotional and financial burdens, both for affected children and their families can be devastating.

A local doctor who lost his 9-week-old son to cancer two years ago is spearheading an effort to get crucial and hard-to-access resources to families struggling in the aftermath of a pediatric cancer diagnosis.

Chattanooga orthopedic surgeon Jim Osborn, a clinical instructor at the University of Tennessee College of Medicine’s Chattanooga campus, founded the Austin Hatcher Foundation after the death of his infant son, Austin Hatcher, in 2006. The foundation, which offers diversion therapy activities and need-based scholarships to help families struggling to pay their bills because of their child’s cancer, now is establishing a comprehensive center called Hatch’s House of Hope.

The center, to be located in Erlanger hospital’s medical mall, will provide free support services, including neurocognitive testing before and after a child receives cancer treatments, emotional support and grief counseling, and financial assistance for children and families affected by pediatric cancer.

Educational programs will help recovering children overcome any cognitive and learning deficits, Dr. Osborn said.

“Our intention is that we will take the Hatch’s House of Hope and it becomes the standard for every cancer center,” he said.

ACCESSING HELP

Accessing those services — and getting insurance to cover them — can be a huge challenge for families coping in the aftermath of a cancer death or recovery, said Dr. Manoo Bhakta, director of pediatric oncology at T.C. Thompson Children’s Hospital.

Hatch’s House of Hope will be a “unique” and “essential” resource in Chattanooga, he said.

“This is something that’s well known — the devastating effect of cancer on the child and family, but it’s not addressed,” Dr. Bhakta said. “Our responsibility to children with cancer is not just treating and curing the cancer; it’s much greater than that. We must very carefully help them through their development and growth after having been treated with this type of intensity at a very young age.”

About 62 percent of pediatric cancer survivors have at least one chronic health problem in adulthood, compared with 37 percent of their siblings who did not have pediatric cancer, according to a 2006 study on adult survivors of childhood cancer published in the New England Journal of Medicine.

The Hatch center also will provide testing and emotional support to siblings of children who are recovering from or who have died from cancer.

When a child dies from pediatric cancer, “sometimes in these situations siblings suffer the most, and there really wasn’t a resource for them” in town, said Wallis Davies, child life director at T.C. Thompson.

Hatch’s House “is going to be a great resource for us at Children’s Hospital to be able to refer our patients over there for additional help,” she said.