September 25, 2018

Beyond the Numbers: Cancer Survivor Charlie Johnston is Beating the Statistics

By Ronnie Musselwhite

The number is as mind-boggling as it is heartbreaking: 15,700. That’s the number of children who are diagnosed with cancer each year in the United States alone. Globally, the figure stands at more than 200,000.

Charlie Johnston joined the ranks of these unenviable statistical groups on August 3, 2015, when oncologists at Mission Children’s Hospital in Asheville diagnosed the then-15-year-old with acute lymphoblastic leukemia (ALL). To further complicate matters, Johnston tested positive for the Philadelphia chromosome, a rare condition that occurs in less than 5 percent of pediatric patients with ALL and requires more intensive treatment to cure.

“It was shocking,” said Cindy Johnston, recounting the moment she learned of her son’s diagnosis. “When we first got the news, I just zoned out — I couldn’t believe it.”

That familiar refrain is uttered frequently when someone learns they or a loved one has cancer, and even more so when a child receives the news. After all, how could a young person who hasn’t even begun to truly experience life be dealt such a life-altering blow as cancer?

It’s a fair question, but it’s one with no comforting answer. That’s because cancer doesn’t discriminate. Young or old, black or white, rich or poor — it doesn’t matter. The dreaded six-letter word that kills more than 8 million people worldwide each year doesn’t recognize age groups, ethnic divisions, socioeconomic classes or geographic boundaries. All this disease, in whatever form it manifests itself, understands is how to destroy healthy cells throughout the human body.

According to Cindy, the battle being waged within Charlie’s body when he was admitted to the hospital in August 2015 was intense. After weeks of being misdiagnosed by doctors at an urgent care center for a fever he couldn’t shake, a physician visiting from a nearby facility ordered a blood panel, and then directed Cindy to immediately take Charlie to the hospital. He was admitted, more blood work was performed, and she soon received the news that would paralyze any parent. “When we got up there, he was in pretty bad shape,” she said. “If we hadn’t gotten him up there that day, he probably wouldn’t have made it.”

Fortunately, Charlie — like all children in areas of western North Carolina served by Mission Children’s Hospital — had access to Mission Children’s Pediatric Hematology/Oncology clinic located at Mission’s SECU Cancer Center. This multifaceted team includes three board-certified physicians, two specialized nurse practitioners, experienced pediatric oncology nurses, pediatric pharmacists, two social workers and a child life specialist, all of whom are dedicated to helping patients and their families “fight like a kid.”

“We aim to provide exceptional, state-of-the-art care for the kids while engaging the entire family,” said Ginna Priola, MD, a pediatric hematologist/oncologist with Mission Children’s Hospital. “Cancer doesn’t just affect the child — it affects the patient’s entire social circle, from an emotional, physical and social standpoint. And, of course, there are the economic strains that it can put on a family.”

Treatment, in Charlie’s case, started in August 2015 and saw him enter remission by September; however, he had to continue chemotherapy, which included 24 spinal taps in addition to intravenous injections, until this past May to ensure all the cancer was killed. During the three-year journey, he choked down hundreds of pills, spent countless nights in the hospital, endured some seizures and intestinal swelling caused by reactions to the medications and, unfortunately, experienced the passing of several younger friends he’d made along the way who were fighting similar battles.

Therein lies what may be the most painful wound that cancer inflicts upon its young victims: the loss of childhood innocence, as they’re forced to cope with a dizzying range of emotions and stark realities most others their age can’t comprehend.

“It was kind of disappointing, knowing that it would affect my life,” said Charlie, seemingly underplaying the magnitude of learning of his diagnosis. “I had to drop out of school, stay out of public places to prevent being sick and it got to where I couldn’t do ‘hard’ stuff — a lot of times, I could barely walk.”

Still, Charlie soldiered on, encouraging those around him and providing inspiration for his family and friends. On the days when he had the strength, he fi shed and did anything he could to be outdoors. Other times, when the weather wasn’t cooperating or his blood counts were off, Charlie tended to his coin collection, a hobby he picked up to help pass the time during his recovery that has since turned into a passion. Through it all, he remained positive and developed bonds with his nurses and other caregivers, and strengthened the one between him and his middle sister.

These days, Charlie is cancer free. In late May, he had his chemo port removed, and a few days later, he graduated high school, on time and with his friends. In June, Charlie turned 18 and soon after, began taking classes at Asheville-Buncombe Technical Community College with the hopes of eventually entering law enforcement. In his free time, he fishes, bowls, hikes — whatever he can to “get out and have fun, and avoid being cooped up.”

As much as life has returned to “normal” for Charlie, he realizes his is forever changed. For the next 12 months, he’ll have monthly appointments to have his blood checked. The checkups will be reduced to once every two months in the second year, before eventually decreasing to annual appointments after being cancer free for five years. Even with clean bills of health, Charlie will remain on oral medication for the rest of his life.

Even so, it’s outcomes like these that drive Dr. Priola and her colleagues, as well as most providers who’ve chosen to make caring for pediatric cancer patients their life’s work. “If you ask anyone in the field, the kids make it worth it — they’re so resilient in every phase of this journey,” she said. “They’re the ones who keep us smiling.

“Our pie in the sky is to never have to say ‘cancer’ in front of a parent or child again,” Dr. Priola said. “It’s a lofty goal, but every one of us have that goal when we enter this field. That’s what keeps us going.”


Ginna Priola, MD, is a pediatric hematologist/oncologist with Mission Children’s Hospital.

To learn more about the pediatric cancer services at Mission Children’s Hospital, visit missionchildrens.org.

 

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