Families fighting childhood cancer face challenges during pandemic

Written on September 29, 2020

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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.

Normally, the program meets with every single one of its families face to face — in hospital waiting rooms, cafeterias or over coffee.

“COVID obviously changed all of that,” she said. “But we’re still responding. We’re still doing those intakes, we’re just doing them by phone and making sure that your family’s needs are being met.”

Rena York learned about Children’s Cancer Partners through one of the social workers at Brenner Children’s Hospital in Winston-Salem, where she’d moved Alex in January 2020. He had been at the hospital for 157 days.

Alex has been at home since the pandemic started, because of the heightened risk of catching something from other patients at the hospital with his compromised immune system. Since being home, he’s “progressed in a very, very positive way,” York said, with better blood cell counts and returning strength. He is still waiting to get his final scans — something that has been delayed due to COVID-19.

“Even though he hasn’t been in the hospital, you know, she still reaches out to me and still checks on me to see how we are doing how and Alex is doing, so they’ve been really great,” York said of CCP.

#AlexStrong

When the pandemic started, York lost her job working with disabled adults. At first, she thought she’d have a job to come back to once the pandemic was over. Now, she faces the dilemma of needing to make money to help provide for her family, while also needing to limit her exposure to the virus to keep Alex safe.

“Not working right now has been extremely hard,” she said. “Because you know, no matter what you’re going through in life, bills don’t wait.”

Still, the support from Children’s Cancer Partners has helped. They’ve reimbursed York for her gas to and from the hospital in Winston-Salem, for parking and for meals bought while at the hospital or an appointment.

The average individual hospital stay for pediatric cancers costs over $40,000 — a burdensome cost on its own, but especially when coupled with the fact that nearly 75% of these families experience a loss of 50% or more of their household income, according to CCP’s website.

“It’s devastating,” Allen said. “It’s financially crippling, to so many families. Two-income families typically become one because one parent becomes the caretaker for that child. But the bills don’t change, they’re the same. And in many cases, they become increased.”

York felt this strain acutely — a single mom of four children, Alex being the youngest, her loss of income feels especially challenging. Alex’s dad, Miguel Flores, helps with his care and appointments, but it’s still hard.

“It was just really hard because even though his dad is in the picture, I am a single mom of four kids, so it was hard to be at the hospital with him and then try to be home,” York said. Your whole entire life is turned upside down. Everything changes. I mean, you know, the life that you want to know, it is no longer.”

This is a reality for many families. In North Carolina and in South Carolina, Allen said, there are at least 400 children diagnosed with cancer a year. And more than 15,000 cases of pediatric cancer are diagnosed annually in the United States, according to 2020 data from the Centers for Disease Control and Prevention.

“Most people don’t know or think about childhood cancer… Most people are stunned to learn that childhood cancer is the number one disease killer of children,” Allen said. “that one in five don’t survive, that children that live in rural and poor areas are three times more likely not to survive. And we’re working a lot to do messaging around that.”

During the pandemic, the organization has had to move a lot of work online — “Zoom became our new best friend,” Allen said. Still, she feels her team has adapted to still meet the needs of CCP’s families. And though she is working to mitigate losses of funding from special events canceled this year, she emphasized that any families of children with cancer should reach out for help, which they can do on CCP’s website or by emailing Allen.

“We can be a resource for them,” she said, adding that donations of all sizes are much appreciated and can also be given through the website.

Though the financial assistance is an important part of what Children’s Cancer Partners does, it’s not all they do.

“They are very in tune with everything that you need — they make sure to see how you are emotionally as well,” York said. “So it’s not like they’re just saying, ‘OK, well, here’s the website, you can go on it.’ They’re like, ‘Oh, hey, how’s Alex doing? Is he doing better? You know, how are things going?’”

This type of emotional support has been so crucial for York, who has watched her young son go through so much physical pain.

“He had close to 50 spinal taps and chemo injections into his back. He was poked, I think, over 144 times,” she said, starting to cry. “I just have to take it day by day and do the best that I can. But I have to say, he’s been the strongest little boy that I know.”

York has tried to remain positive, relying heavily on her faith in God and updating friends and family on Facebook with Alex’s progress, culminating every post with the hashtag, “#AlexStrong.” Still, having a child with cancer is difficult, no matter how you look at it. Alex has night terrors, York said, thinking he is back in the hospital. She still doesn’t have a job, and doesn’t know when she will find one — especially when she needs her job to have limited exposure to others and flexibility to attend all of her son’s appointments.

“It’s been really, really hard,” she said. “Just going through the cancer is one thing, and then this virus hit and it’s just like a whole other dynamic added to it.”

Reporter Hannah McClellan can be reached at hannah@chathamnr.com.

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