Riding the Roller Coaster of Cancer
Among the 1,000 or so books that Nikki Kerry estimates line the bookshelves in her kids’ playroom, she counts a few dozen “special” books, so designated because they were given to her daughter Gracin by Children’s Hospital Los Angeles, where Gracin has been a patient since being diagnosed with kidney cancer as a toddler 10 years ago.
“I don’t know if I have every one,” Nikki says of the more than 100 titles Gracin has received from CHLA’s Literally Healing Program, which dispenses books freely to patients. But she can confirm she has the first one, “What Makes a Rainbow” by Betty Schwartz. It was read to Gracin daily by one of the program’s bedside readers over the six-month course of surgery, chemotherapy and radiation that followed the finding of the rare tumor, called clear cell sarcoma of the kidney (CCSK).
“She could sit there for hours flipping through the pages of the book,” Nikki says. “It brought a little bit of normal into a really significant life situation. As normal as we could make it.”
Since her treatments ended in March 2006, Gracin has shown no evidence of cancer, and in May 2014 she passed another milestone. Her oncologist, William May, MD, released her from his care; she’s now in the hands of the hospital’s cancer survivorship program. Nikki quotes the doctor: “He said, ‘I think we have a lot of comfort that her cancer is not going to return.’”
Still, that doesn’t make the few days spent waiting for the results of Gracin’s annual imaging tests any easier. “There’s a word parents use,” Nikki says. “It’s called scan-xiety. You can’t help it no matter how long you’ve been out.”
Gracin comes twice a year to CHLA for a screening and to monitor the late side effects of chemotherapy that ail her, the most serious being cardiomyopathy, a weakening of the heart muscle that restricts its ability to pump blood. With each visit, she and her mother deliver boxes of books to the Literally Healing Program, replenishing what they have taken from it—and then some. Nikki says it’s a show of gratitude for sparking Gracin’s passion for books.
“She loves to read,” Nikki says, “and really our exposure to books was the hospital. That daily time, I’d like to think that was the start of her love of reading.”
When she’s not engrossed in a book, Gracin is often immersed in water. She swims competitively with her local Long Beach swim club, Swim City, and this past May she was part of a foursome that qualified for the Junior Olympics in the freestyle and medley relays. Only a couple of months later, she notched perhaps an even greater accomplishment.
A member of Long Beach’s Junior Lifeguards, Gracin raced in the program’s annual Iron Guard competition, a 2-mile ocean swim combined with a 4-mile run for kids ages 9-17. She finished in 1 hour, 52 minutes, breaking the 2-hour threshold required to be named an Iron Guard—a remarkable feat for any kid, more so for one who bears the physical effects of having half her body radiated, including scoliosis.
“I almost shaved an hour off,” Gracin says, noting that the previous summer she finished in 2 hours, 45 minutes. “I didn’t know if I was going to get a cramp in the middle of the thing. But I made it.”
She says she doesn’t expect to take swimming too much further. She sees more of a future in another area of her expertise. “I’d love to have a job that includes math. I have this dream in my head. I want to be a Disney Imagineer. I’d love to build roller coasters for Disney.”
As for the roller coaster she and her family have been on the past 10 years, she doesn’t recall the worst of it. “I don’t remember the big things, but I’ve heard stories. I just feel happy that I’m here.”
