Heath

Fifteen-year-old Heath’s lifelong medical battle started when he was just 10 months old. That’s when he was diagnosed with rhabdomyosarcoma, a rare form of cancer. With the help of his UNC care team, Heath fought that battle and won—but his fight for life was far from over. He then went on to receive a heart transplant at age 10. This is Heath’s story.

A Lifetime Battle

Heath with his mom, Roxanne, in the pediatrics unit at N.C. Memorial Hospital in 1997. The 10 month old lost his hair soon after beginning treatment to fight the rhabdomyosarcoma.Written by Sarah Johnson for N.C. Children's Hospital

Fifteen-year-old drummer Heath is hardcore. His band rocks out to hardcore music, but what’s even more impressive is Heath’s battle for life since he was only 10 months old. Heath fought and overcame a rare form of cancer as an infant, then went on to receive a heart transplant, all under the pediatric care of UNC Health Care. Now that’s hardcore.

When Heath was only 10 months old, his pediatrician in Wilmington discovered a tumor and immediately rushed the infant via ambulance the three hours to UNC. After some testing and a biopsy, the pediatric oncology team diagnosed him with rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to the bones. The medical plan was to start Heath on a chemotherapy protocol until the tumor was small enough to remove it in surgery. Fortunately, the chemo was quickly successful, and the tumor was removed shortly after Heath's first birthday. Caregivers continued post-surgery with radiation and then another bout of chemo until Heath’s visits to UNC and the necessity of his routine scans became less frequent.

“With Dr. Gold and the oncology part of his care, we were spoiled by it,” recalls Heath’s dad, Michael. “They were amazing as far as how they kept us informed. Your whole world is turned upside down. They could have been very clinical and not so compassionate. They were doing their job, but they also made sure we knew everything that went on. That whole team has become a part of the family.”

Heath recovering at N.C. Children’s Hospital, just nine days post heart transplant at age 10.Heath's pediatric oncologist, Dr. Stuart Gold, has a special bond with Heath and his family, whom he calls "the Smiths," since their last name that is long and difficult to pronounce. He also teases both Heath and his dad, who favor long hair to go along with their band image, that he is going to cut it off one day.

“I think/hope/pray Heath got great care in both the new and children’s hospital,” says Dr. Gold. “The new one sure is more spacious and comfortable for our families. It allows us to care for kids in a warmer, more kid-friendly environment.”

Heath’s dad agrees. “The comfort level in the new hospital is amazing. It just seems to be a much more convenient and much more user friendly place for the providers, which then makes it much more friendly for patients. I hoped I would never see the inside of the new hospital once it was built, but it is fascinating.”

Cancer free, Heath fared well until around the age 6, when teachers at school began to notice he was fatigued. This went on for some time until more severe symptoms brought him to the hospital in New Hanover. Tests indicated signs of heart failure. Once stabilized, Heath was air lifted to UNC, this time to the new children’s hospital, opened in 2002.

Cancer was soon ruled out as a cause, with the exception of a suspicion that medicine that providers had used earlier for chemo had resulted in heart damage. Although Heath was extremely ill that inpatient stay with liver failure, kidney failure and sepsis, he pulled through and eventually went back home. He was put on the heart transplant list at age 6, later taken off and then put back on at age 10 when he showed recurring symptoms. From this point, things happened quickly. Slightly more than a week after his name was put Even before his first birthday, Heath played drums on a coffee can with shortened drum sticks in his hospital crib. He got his first drum set on his last day of chemo on July 4, 1998, at age 2.on the list, his family got a call late one evening that they had a donor. The next morning, Heath received his new heart.

Since his heart transplant, Heath has a new lease on life. At 15, he feels “just like all of the other teenagers. Half of the time, I don’t even acknowledge that I’ve got a huge scar on my chest,” says Heath.

Heath lives for his drums and his music and is in multiple bands, one of which he plays professionally alongside his dad.

“Before he had been suffocating,” says Michael. “With his new heart, everything works the way it is supposed to. We were so used to him being fatigued, now it’s like he is a whole different kid.”

According to dad, the two have been “making music” since Heath was a baby and now they even write their own music together. Above all, though, Michael’s biggest joy as a parent is the fact that his son is there to wake up every morning.

“When he was a baby, we wondered would he start school, will he live to be a teenager? He’s sort of pulled it off, year after year,” says Michael.

And for Heath, it’s pretty simple as well. What makes him most happy, he says, “are my friends, my family, my drums, music and being alive.”

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