Children's Cancer—First-Grade Diva

A Close Watch at the Waters Center...

More than 80% of children with cancer now survive. This is a major victory, but it can be bittersweet. As many as 75% of these childhood cancer survivors eventually develop a late-effect medical, psychosocial or neurocognitive problem related to the treatment that cured their cancer. Radiation and chemotherapy can lead to long-term complications such as learning disabilities, growth and development problems, cardiac and pulmonary conditions and secondary cancers.

To reduce the negative impact of childhood cancer treatment, our Waters Center's Kids Now Off Therapy (KNOT) Clinic currently monitors more than 450 cancer survivors, ages 5 through 41. More than 200 hospitals now offer similar programs. But 18 years ago, when the KNOT Clinic was established, Upstate was one of the first to offer this visionary, long-term care for survivors of children's cancer.

Now serving a 17-county region, the KNOT clinic evaluates patients at least once a year and refers them, when necessary, to a statewide network of pediatric and adult specialists. Children with growth problems, for example, may see a pediatric endocrinologist for hormone treatment. Children with cognitive late effects have access to Upstate'•s nationally recognized team of medical and learning specialists who evaluate students, develop recommendations and advise school districts. "Twenty years ago, these survivors fell through the cracks," notes Susan Shaw NP, coordinator of the KNOT clinic. Today we are proactive. Each patient has an individualized treatment plan and, if necessary, access to specialists familiar with late-effects.

Sierra was sent to University Hospital, where a neurosurgical team spent five hours relieving the pressure on her brain. When Sierra woke up after surgery, "She was her perky self and ready to go home," says her mother, Katrina. "We had to tell her about the tumor. She took it like a trouper."

The next day, her neurosurgeons tackled the tumor itself, with a painstaking procedure that took eight hours. "It's rare to completely remove this type of tumor, but they were optimistic," reports Katrina. "Still, there had been so much pressure on my baby's brain. They couldn't predict the impact. The tumor had wrapped itself around parts of the brain that control speech, walking, memory and even her personality —all the things that make her "her."

"After Sierra came out of surgery, her neurosurgeon sat by her side all night, as if she were his own daughter," remembers her mother.

When Sierra awoke in University Hospital's Pediatric Intensive Care Unit, she couldn't walk, talk, speak or see clearly. "We couldn't tell what was temporary and what was permanent," her mother says, "but with therapy, she made huge improvements. When she left the hospital six weeks later, Sierra was almost herself again."
Still, Sierra faced months of therapy, plus chemotherapy and radiation, to thwart the return of the tumor. But every medical service she needed—neurosurgery, neurology, oncology, radiation oncology, physical and speech therapy—was right here, at University Hospital.

In addition to the most advanced medical care, Sierra and her family found priceless support services at the Waters Center for Children's Cancer and Blood Disorders. And throughout her treatment, she was either at home or close to home and surrounded by her family, including nine brothers and sisters, and all her friends. "On the night she first went in to surgery," her mother says, "Sierra's entire cheer-leading squad came to the hospital. We had more than 60 people praying for her."

Their prayers were answered. Today, Sierra is thriving. Her weight is up to 52 pounds (compared with 27 pounds when she came home from the hospital last year). Her sense of balance is almost fully restored, and next fall she plans to ease back into cheerleading.

The silver lining in Sierra's ordeal is the strong and caring spirit that has emerged. "Sierra has never complained," says her mother. She put all her energy into getting well. In rehab, she was always pushing other patients, younger and older, to eat and do their exercises. "If I can do it, you can do it," Sierra would insist. "I'm only 6, and I do everything they tell me.'"