How parents of children with cancer are navigating COVID-19

The Friday afternoon after Thanksgiving, Rena York heard the words no parent ever wants to hear from their child’s doctor: “We think it’s cancer.”

“Everything from that point forward was a little bit of a blur for me because it was kind of like being thrown into a tornado and you just have no idea what’s happening,” York said.

Only two weeks before, life had been normal. One day, York got back from work and her then-3-year-old son, Alex, was crying about how much his legs hurt. He had a low-grade fever, so she gave him Tylenol.

Within 30 minutes, the fever was back.

Over the next week and a half, York went on three different doctor visits. She was told her son had a virus, that fluids would help. They didn’t.

“I’ve never experienced anything like this where the fever just won’t go away,” she remembered thinking at the time. During a third doctor visit in the span of a little over a week, her doctor suggested Alex might have the flu.

“I could tell he was going downhill instead of better,” she said. “I’m like, ‘You’ve already tested him for the flu. This is not the flu. Something’s wrong.’”

On the Friday after Thanksgiving, she drove 45 minutes from her house in Siler City to the emergency room at UNC Hospitals. The confusion wasn’t over — before the weekend ended, York was told her son’s diagnosis was a mistake. As a mom, she felt helpless in the face of her son’s increasing pain; he’d lost 9.5 pounds in one week, wasn’t eating and couldn’t stop crying. A few days later, she took him back to the hospital, where his diagnosis was finally confirmed.

“Alex’s dad was like, ‘Why are you crying?’ I said, ‘Because I already know what he’s going to tell me,’” she remembered saying as the doctor approached her.

“I walked out in the hall with him and he takes me into a room and he says, ‘I’m really sorry to have to tell you this. But the one cell that we picked up last week that the machine did not pick up,’ he said, ‘it has now tripled, and he definitely has cancer.’”

That day, Alex was admitted to the UNC Children’s Cancer Floor. He had Burkitt leukemia in his blood, bones and bone marrow, along with 12 masses and tumors. Just a few days before, doctors suggested she was overreacting, that her son just had the flu.

Impacts of COVID-19

When Alex was diagnosed with cancer, his family joined the tens of thousands of families in the United States living with the devastating reality of pediatric cancer. Difficult enough on its own, these families are now facing what feels like an especially cruel challenge: the added stressors caused by the COVID-19 pandemic.

Among additional acute financial strains — like paying for childcare due to visitation limits at hospitals, the cost of hotels because Ronald McDonald Houses are closed and income lost due to an unstable economy — parents are also facing the stress of virtual schooling, driving far distances to avoid planes and increased isolation to prevent any exposure to COVID-19.

The combination of factors can be overwhelming, said Laura Allen, the executive director of Children’s Cancer Partners of the Carolinas (CCP). Children’s Cancer Partners, a nonprofit organization, works to support families navigating pediatric cancer diagnoses through organizational assistance, events to connect families battling cancer and funds for travel, lodging and meals.

“The mission and the purpose of what we do is to make sure that every child, regardless of their income, or their family’s income, has the access to treatment care,” Allen said. “And our goal is to make sure that that child gets it, whether we’re providing the gas or rent, the car or plane tickets or collaborative organization.”

Founded nearly 20 years ago in South Carolina, CCP recently incorporated North Carolina into its program in November 2018. In North Carolina, Allen said, there are only six pediatric oncology centers, while more than 100 exist for adults. The program currently has 1,200 children from N.C. in its program.