Being Cancer-Free Feels Like Freedom
As a toddler, Carly Rivers had a little tummy, what her mom Marty calls a pot belly. Her twin Kyla didn’t. “We just thought Carly was a little chubby,” says mom.
The two-year-old had been passing blood clots, which were diagnosed as urinary tract infections. But when she developed a small knot that protruded from her stomach, Marty and Carly’s dad Tommy, grew alarmed.
Their pediatrician ordered an ultrasound and referred them to pediatric surgeon Dr. Robyn Hatley at Children’s Hospital of Georgia, who admitted Carly to the children’s hospital that day.
When a resident came in Carly’s room the next morning and said she was with the oncology team, Marty says her “mind started racing, and what they said after that was a blur. I asked them, ‘Are you telling me my daughter has cancer?’ It took two weeks for me to grasp the situation.”
Carly had a Wilms’ tumor, a cancer of the kidneys and the fourth most common cancer in children. Highly responsive to treatment, it afflicts about 500 children in the U.S. each year.
“She had a tumor on the left side of her kidney that was extending to the right side, with involvement of the pancreas, spleen and other organs,” says Dr. Hatley.
“It was a whirlwind. Carly got an immediate diagnosis and we began treatment right away,” he continues. “That’s one of the great benefits of a children’s hospital — all the pediatric specialists that are needed are right here and ready to participate.”
She began the first of 11 chemotherapy treatments that same afternoon, in an effort to shrink the tumor so it could be more safely removed. “It was the size of a small watermelon, inside her little, two-year-old body,” says her mom incredulously.
“We didn’t want to do anything life threatening,” says Dr. Hatley. “Chemo works very well on this type of tumor.”
“One thing that really helped me, when we were diagnosed, was that the hospital gave us these binders with important information like doctors’ names, facts on childhood cancers, the treatment plan, home health care instructions, common questions,” says Marty. “We knew exactly what day she’d be getting what type of chemo, common side effects — everything we wanted to know and even things we wouldn’t have thought to ask.”
The mass shrunk significantly, and Dr. Hatley safely removed it. After a few more rounds of chemo, Carly was in remission.
But three months later the cancer returned, this time in her right lung.
“Now I was scared that she was going to die, because it had come back,” says Marty. Throughout it all, when she needed answers, reasons or just reassurance, Marty says she would call physician assistant Beth Fisher. She also continued to have faith in Carly’s doctors. “There weren’t many times that I had a question that they didn’t have an answer.”
Carly endured another surgery, 48 weeks of chemo and radiation treatments. Constant tests, including EKGs, ensured no organs or other part of her body were being compromised.
Meanwhile, Carly continued to act like herself. “She ran and played with her sisters — she got tired more often, but that seemed to be all. She went to school the entire time,” recalls Marty.
She praises the hospital’s child life specialists, professionals who help children understand and cope with cancer.
“They keep these kids going, not letting them stop long enough to get down about what they are eduring,” she explains. “They come up with lots of things to keep them happy and free from worry.”
There was just one thing that phased Carly.
“One day she suddenly asked me why her hair was falling out,” says Marty. “I explained it would come back. And boy, did it ever!” she laughs about Carly’s curly, thick, bright red mane. “After her hair came back in, she dealt with her condition better.”
This month marks five years of Carly being cancer-free, a particularly important milestone for this type of cancer since second re-occurrences are often fatal.
“I feel like I can really breathe again,” says Marty.
Now nine, Carly starts fourth grade this fall, enjoys clogging, singing and math. She loves attending Camp Rainbow every summer, and giving her opinion as a member of the children’s hospital’s Kids ART Advisory Council.
“We get to decide stuff like what the nurses wear, what food tastes good to kids, and we shop for toys for patients,” says Carly. Made up of children and teens, the council provides input on topics like menu planning and staff interaction as well as helping with fund-raisers.
And the best part: “I feel freedom knowing I don’t have to go back in the hospital,” she says.
Robyn Hatley, MD
Professor of Surgery/Pediatrics