‘No one is left behind’: Organization helps children get cancer treatment across the Carolinas

CHARLOTTE — Ten. That is how many pediatric cancer care centers there are across the Carolinas.

In 2024, 700 children in North and South Carolina are expected to be diagnosed with cancer. The emotional stress on families is compounded by the financial factor of traveling to one of the few pediatric cancer facilities in the states.

Penelope Macaluso was diagnosed with leukemia in 2020. Her family is still getting bills for her treatment.

“Definitely a shock, definitely felt really overwhelming at the time, especially given the pandemic,” said Alessandra, her mother.

When they found out about Penelope’s condition, they were told to act immediately and go to Levine Children’s Hospital, one of the 10 facilities in the Carolinas equipped to treat her.

“We’re 12 miles from this facility,” said her father, Greg Macaluso. “How lucky we were that it’s right here. There is a lot of people that don’t have that.”

Penelope is now cancer-free, but her family worries about the others in the Carolinas who don’t have the same level of proximity to life-saving treatment.

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PENEOPE MACALUSO (Courtesy of: Alessandra Macaluso)

Laura Allen, the director of the Children’s Cancer Partners of the Carolinas, says one of the biggest challenges for families is getting to a pediatric cancer center. The CCP says 75% of childhood cancer families suffer the loss of half or more of their income.

“Children that are in Wilmington are traveling two and a half, three hours to get to UNC or to get to Duke,” Allen explained. " There’s nothing in the Cape Fear area, western North Carolina, which already has enough community indicators that are making their lives difficult have to travel to Asheville.”

Often, children visit multiple hospitals before finding one that offers the treatment they need.

“If Asheville doesn’t have what they’re needing, then they’re going to UNC,” Allen said.

The Macalusos were surprised to learn that only 4 percent of research dollars go to pediatric cancer. Only one in five children survive beyond five years of diagnosis.

“We keep reading about wonderful breakthroughs for adults,” Allen said. “An adult loses typically maybe 12 years of life in a diagnosis of cancer. When a child is diagnosed, there’s a loss of 76 years.”

Penelope’s father Greg said he’s helped some families choose a home based on proximity to treatment centers, but if his family didn’t already live close, they may have had to spend even more money to be with Penelope.

“My group has helped families move here because they were coming closer trying to move closer to the area to get assistance,” he said. “We may have been saying, I guess we have to buy a condo or do something, so that she could be closer to the treatment center.”

Allen said CCP devotes resources to getting children the treatment they need and making sure their families are there with them.

“So we’re picking up the hotel expenses for families to make sure that they can be with their child. We’re getting those children to treatment we need equity for every child so no one is left behind,” she said.

Cancer is the leading disease killer of children, CCP says.

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