Tom Corwin is the Health Reporter for The Post and Courier. He is a graduate of the University of Missouri and has covered science, medicine, politics and state legislatures for newspapers in Missouri, Tennessee, Georgia, and South Carolina.
Rhys Shaw of Daniel Island came in from a visit to the pool and went straight to his room, posting a sign on his door warning his family he had COVID along with a list of his symptoms.
It was July 2020, and Rhys is a perceptive kid, , said his mother Lisa, so it made sense that his sore throat, runny nose and headache were just that.
But it would turn out to be something far worse. Rhys, then 10 years old, would eventually be diagnosed with T-cell acute lymphoblastic lymphoma. He underwent chemotherapy that turned out to be unexpectedly toxic, landing him in the intensive care unit and prompting surgery at one point to relieve swelling in his brain.
Rhys, now 14, is still feeling some of the effects of his cancer battle, Lisa Shaw said, as do most kids who go through it.
A recent report was celebrated by South Carolina doctors that showed the progress in survival and plummeting death rate from childhood cancer over 25 years.
Between 1996 and 2016, the five-year survival rate from childhood cancer increased 11 percent in S.C., while the death rate plunged 21 percent between 1996 and 2020, according to the report from the South Carolina Childhood Cancer Taskforce.
But even with that success, there is still an urgent need for more research, and particularly for better therapies developed specifically for children, said Dr. Michelle Hudspeth, director of pediatric hematology/oncology at the Medical University of South Carolina.
"We have made significant progress," said Hudspeth, a member of the task force who treated Rhys. "I think all of us who take care of these children, we see that."
It didn't happen overnight -- it was the result of a lot of hard work and research that took a long time to come to fruition, she said.
While there is still a gap in the five-year survival rate for White children at 86 percent and Black children at 80 percent, that gap has narrowed over time, the report found. National clinical research into risk factors has helped doctors identify what might be more common in Black and Hispanic patients and helped tailor approaches.
But it is also due to the "dogged determination" of clinicians, from pediatric oncologists to nurses and social workers, to get those patients better access to care, Hudspeth said.
"I mean, there's just this unyielding commitment to finding some way to get the patient what they need," she said. "And I think it truly is a testament to just a lot of intentional, hard work of the teams that really feel a commitment to our children."
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That help is needed by families and patients, most of whom are cared for at the state's three pediatric cancer centers in Charleston, Columbia and Greenville. A majority of those families are traveling an hour or more to get care.
In the case of MUSC, which has the state's only pediatric stem cell transplant program, for instance, it could be three or four hours each way, Hudspeth said.
The state's systems are also under increasing pressure as childhood cancer increased 11 percent in S.C. between 2001 and 2020, particularly in leukemia and lymphomas such as the one Rhys was diagnosed with, although those increases are lower than the regional and national rates, the report found.
And as more children survive cancer, and survive longer, it creates a greater need for social support and ongoing treatment because the majority will have some lingering medical issue from their treatment. There are currently more than 2,800 childhood cancer survivors in South Carolina. As they get older, they can actually age out of their pediatric care and the state's Medicaid program, which insures children and adolescents under age 19.
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"What we see is that those young adults often fall through the cracks because they have difficulty obtaining insurance coverage," and ensuring ongoing care, Hudspeth said. A major priority from the childhood cancer report is identifying better ways and potential policy changes that could help ensure that vulnerable population continues to receive care, she said.
One reason for that is the potential toxicity of treatments. The vast majority of them were not developed for children with growing bodies.
"Most of what we've been able to do in pediatric oncology has simply been taking what's developed for adults and trying to figure out how to best apply it to children," Hudspeth said.
Childhood cancer is rare compared to cancer in adults, but it still only receives 4 percent of federal research funding, and that then has to be applied to more than 20 different forms of childhood cancer that need to be studied and treated.
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Doctors do the best they can with what they are given, but the medications can create their own problems, as Rhys' family found out. His symptoms, particularly the sore throat, appeared to stem from what looked like a mass behind his tonsils. He initially tested positive for strep throat -- he'd had it before -- but medication didn't help.
A specialist looked at it and thought it might be an abscess, an infected lump. The odd location and the confusing test results eventually resulted in a hospital stay over two weeks with a potential diagnosis of a lymphoma then being contradicted by other indicators. Eventually, Rhys' biopsy was sent off to the National Institutes of Health in Bethedsda, Md., to await an official confirmation.
In order not to worry him, Rhys was told he was there to get his tonsils out, but "he kind of knew already that something wasn't right," Shaw said.
It would turn out to be the lymphoblastic lymphoma, an aggressive blood cancer. The family had already reached out to get Hudspeth on board to treat him.
It was the height of COVID restrictions at the hospital, which made everything harder. It was only his mother and father with him, and Rhys' 8-year-old twin sisters were not allowed to visit. But their Daniel Island community responded by standing on the top of a nearby parking deck to wave signs and shout encouragement, and they threw an impromptu parade for Rhys when he left the hospital about two weeks later.
Right from the beginning, Rhys ran into complications, once from fire ant bites he didn't really notice because the chemo knocked down his immune system. Once his body started to strengthen again, it caused a perplexing fever.
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The worst was yet to come. In January 2021, after months of treatment, Rhys had a seizure in the driveway, and his mother had to jump in and perform CPR as neighbors who heard the commotion called an ambulance. It would result in his first stay in the ICU, and he would later go on seizure medication.
But what once were thought to be seizures turned out to be ministrokes, Shaw said, which led to several more ICU stays.
Just two days after one ICU release, he had a larger stroke related to bleeding in his brain.
"They weren't sure he was going to make it," Shaw said.
Despite doubts about whether he would survive, surgery on his brain was successful, but also came at a price.
"It took him a while to walk, talk, swallow," Shaw said. "He had to relearn to do everything again."
Rhys had his last round of chemotherapy on Thanksgiving 2022, and again the community celebrated with the family. But its effects linger.
He had stopped growing for two years during treatment and had to catch up to his classmates. The surgery and treatments meant his dreams of playing football were over. But he joined a boys' volleyball team at Bishop England High School, and he is keeping up with tennis. He is growing again, and among his classmates, there are few clues that would alert them to his difficult journey.
Rhys is still getting regularly checked as he comes up on year three of survival. Another two and he will be allowed to ring the bell signaling he is cancer-free, Shaw said.
The key to helping more kids like Rhys is research, and that is another takeaway Hudspeth has from the report.
"We're making progress, but, in the same breath, what are we doing to ensure that we're going to continue to make progress?" she said. "Because it really requires an investment in the research, both in the laboratory and in clinical trials, to be able to see this downstream real effect, which is actually preventing children from dying from cancer."
And treating them with better medicine.
For Rhys, the future is also just being a teenager.
"This year, you're finally starting to see him bloom and get back to feeling like a normal kid again," Shaw said.
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