Philip's hope

Diagnosed with stage 4 Ewing sarcoma on Labor Day of 2013, 14-year-old Philip Rawls’ life was turned upside down. Two years later—and nearly 18 months in remission—he sees hope in the research of pediatric oncologist, Dr. Ian Davis.

Philip's hope click to enlarge Philip with his favorite nurse, Bre Buckner, who has provided care since the beginning of his treatment.

Labor Day weekend of 2013 was meant to be a special occasion for Philip Rawls—one last summer hurrah with four friends on the Carolina coast before starting his freshman year. But as his friends enjoyed the surf and sand, Philip spent two straight days in bed.

For his parents, Cindy and Rob Rawls of Fuquay-Varina, N.C., seeing Philip miss most of his beach vacation was the final straw. Philip had been complaining of knee pain for months. His pediatrician chalked it up to growing pains. When Philip started losing weight over the summer, his parents didn't think much of it, but then he began spiking high fevers ever few days. Likely a virus, his parents thought at first, but Rob noticed a pattern to the fevers. Now it seemed they must be dealing something more serious.

After returning home from Oak Island, Cindy made an appointment for Philip to be seen by his pediatrician. Upon examining Philip, he, too, suspected something more serious. He immediately sent the family to nearby WakeMed in Raleigh, N.C.

“We saw a UNC medical student in the emergency room, and he listed all the things it could be,” says Cindy. “He said, ‘We’re going to do these tests, and you’re not going to leave until we have some answers. It was reassuring and frightening at the same time.”

The results were beyond her worst nightmares: an MRI revealed a tumor in Philip's lower abdomen near his bladder. The tumor had already metastasized to his hip and possibly both femurs. Doctors suspected Philip had Ewing sarcoma, a rare bone cancer, and started making arrangements to transfer him to UNC Hospitals in Chapel Hill, N.C., for tests to confirm the diagnosis and start treatment.

“My mom started crying,” remembers Philip. “And I said, ‘C’mon, Mom. It’s okay. I got this.’ I just knew, whatever it was, I was going to get better.”

Cindy understandably lacked her son’s confidence. As they prepared to leave for N.C. Children’s Hospital by ambulance, the UNC medical student they'd met earlier gave Cindy additional assurance. There were doctors at UNC researching this exceedingly rare cancer, he said. Philip would be in great hands.

Researching a rare disease

The UNC doctor and researcher to whom the medical student was referring is Ian Davis, MD, PhD, an associate professor of pediatrics and genetics in the UNC School of Medicine and member of UNC Lineberger Comprehensive Cancer Center.

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Philip and Dr. Ian Davis at the Hyundai Hope On Wheels handprint ceremony on Sept. 1. (Click to enlarge.)
“Ewing sarcoma is the second most common form of bone cancer affecting children, but it’s really rare,” explains Dr. Davis. “There are only about 250 new cases diagnosed across the country each year, and we see a peak incidence at age 14. That coincides with the timing of Philip’s diagnosis.”
 

Building from studies initiated in the Davis lab nearly 10 years ago, Davis and collaborators in the Center for Integrative Chemical Biology and Drug Discovery in the UNC Eshelman School of Pharmacy recently discovered molecules that could ultimately serve as possible new therapies. Davis and his lab team are currently investigating how this newly identified class of molecules impacts the interaction between DNA and its associated proteins to turn genes on and off—and with this new knowledge, they hope to develop novel strategies for treating of Ewing sarcoma and other similar diseases.

“In the best case scenario, we’ll be able to find and target the ‘Achilles’ heel’ of this type of tumor,” he says.

Studies like Davis’s are critical for kids like Philip—and they're most often done at academic medical centers like UNC, where physician-scientists can both care for patients and engage in research.

“Academic driven drug discovery is particularly important in childhood cancers,” says Davis. “With so few people affected relative to the population, there’s no big payoff luring pharmaceutical companies to invest resources.”

“But even in academia, it’s hard to grab the attention of large funding agencies to investigate these types of tumors,” adds Davis.

And so Davis writes grant proposals and seeks funding from individuals and charitable organizations, including long-time supporters like the Wide Open Charitable Foundation, to keep his research afloat. Meanwhile, families like the Rawlses hope for better treatments and cures.

Philip’s fight

UNC’s pediatric hematology-oncology team confirmed Philip’s diagnosis as stage 4 Ewing sarcoma within hours of his arrival. As he laid in his hospital bed on 5 Children’s, his nurse, Bre Buckner, asked if she could bring him some ice chips.

“I’ll have one,” he replied, not understanding what she was offering.

“Just one?” she asked.

“Yeah, one,” he confirmed.

She soon returned from the pantry with a single ice chip on a spoon. He laughed for the first time since he’d gotten the diagnosis, and just like that, Bre became his favorite nurse and one of his best friends.

And thus began 10 months of weekly chemotherapy with six different drugs. In December 2013, Philip also received six and a half weeks of radiation. The effects on his body were devastating. He lost all his hair and a startling amount of weight, dwindling down to just 91 lbs. He was so weak that he spent an entire year in a wheelchair.

He spent every holiday, including his fifteenth birthday, at UNC. It was a dark time, though the family says they always found light in Philip’s care team. They even held a birthday celebration for him in the clinic, complete with balloons and fake fire on the candles.

“UNC has the best doctors and the best nurses, bar none,” says Cindy. “I can’t put into the words the level of care and compassion we experienced. They just have a calling.”

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The photo Philip texted to his favorite nurse after getting his driver's license. (Click to enlarge.)
Looking at Philip today, you’d never know what he endured. He has a head full of hair and has nearly doubled in weight since finishing chemotherapy.
 

The 16-year-old high school junior has been in remission nearly 18 months and is on track to graduate with his class in 2017, despite all the time he spent in the hospital. When he got his driver’s license last spring, the first thing he did was text a photo to the “One Chip Wonder,” his favorite nurse, Bre.

The young man who once aspired to become an engineer now wants a career as a nurse practitioner specialized in pediatric cancer. He says he has a special place in his heart for people who dedicate their lives to helping kids with cancer—people like Dr. Ian Davis.

Davis was recently awarded a $250,000 Hyundai Hope On Wheels grant to further fund his Ewing sarcoma research. Although Dr. Davis wasn't personally involved in Philip’s care, he and his mother attended the Hyundai handprint ceremony honoring Dr. Davis in the N.C. Children’s Hospital lobby on Sept. 1.

“It makes me hopeful to know that Dr. Davis has dedicated his career to researching cancer,” Philip says. “Maybe there will come a day when no other kids have to go through what I’ve been through. I see the kids in the clinic—they’re going through what I’ve been through—and none of them deserve it.”

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