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Research
She may be one in 3 million, but for Ryan Christian only three things really matter—being strong, healthy and loved.
Dorie Christian likes to tell people that her daughter is one in a million. Actually, that’s an extremely conservative estimate—but who’s counting?
Although her dad is the professional athlete in the family, 8-year-old Ryan Christian has amassed some impressive stats of her own. She’s an award-winning artist, an accomplished ice skater and an avid animal lover. A fashion consultant, soccer player and social butterfly. A gymnast, honor student and basketball player. And she pulls it all off with uncommon grace and enthusiasm.
During a checkup at St. Jude Children’s Research Hospital, Ryan and her parents rattle off the names of the medications she takes. Talk about numbers: The third-grader requires about 40 pills each day as part of treatment for an extremely rare form of cancer known as adrenocortical carcinoma (ACC). Although the overall incidence of the disease is one in a million, the vast majority of those patients are adults. Only 20 to 25 children in the U.S. are affected each year (an incidence of one in 3.3 million children under 14 years of age). But Ryan and her parents, Jeff and Dorie, have reason for optimism. After all, they have come to a hospital that is internationally known for the research and treatment of ACC.
Eight days. That’s how long it took staff at a hospital in Missouri to determine why an otherwise healthy and active girl had suddenly begun suffering from headaches, seizures and dangerously high blood pressure.
“Don’t even worry,” a doctor told Ryan’s parents in February 2010, when scans indicated a mass. “It would be rare for it to be cancer.”
But the tumor that originated on Ryan’s adrenal gland and extended up toward her heart and lungs was malignant. The medical staff’s response did not inspire confidence. “We may be too late already,” their surgeon admitted. “We saw one case of this cancer two years ago,” another doctor said.
As Ryan recuperated from an operation to remove her tumor, one of Jeff’s friends offered welcomed counsel.
“You have to go to St. Jude. It’s the best place in the world for kids with cancer,” he said.
Dorie, an attorney, and Jeff, a professional hockey player, immediately went online to look for information about the hospital.
“We learned that St. Jude had done a lot of research on the p53 gene,” Dorie explains. “Patients with p53 mutations are at risk for a variety of tumors, and one of those is ACC. We also learned that St. Jude has a special protocol they use for Ryan’s form of cancer. Although we were told we could receive the same treatment in Missouri, we knew that it had been developed at St. Jude. ‘We need to go where they specialize in this,’ we said.”
In Memphis, the Christian family felt an overwhelming sense of relief. “After a month of holding our breath, we felt like we could breathe,” Jeff says. “Once we got here, we felt good about everything. They’ve beaten this cancer before, they’re optimistic and we have an amazing doctor.”
“Even our social worker, Judy Hicks, is amazing,” Dorie adds. “She has been there every step of the way. This summer, Judy was awarded the national social worker of the year award. Since St. Jude was recently named the No. 1 children’s cancer hospital by U.S. News & World Report, we tell people that we have the No. 1 social worker at the No. 1 children’s cancer hospital in the world.”
Lisa McGregor, MD, PhD, of Oncology says the level of experience available at St. Jude is unsurpassed.
“We have a long history of studying this disease in children,” she says. “Dr. Raul Ribeiro and Dr. Gerard Zambetti have collaborated for many years with researchers in Brazil because this tumor occurs more frequently there. The International Pediatric Adrenocortical Tumor Registry is based right here at St. Jude. As a result of our interest, this hospital is one of the international centers of expertise in this tumor in children. Ryan is being treated on a national Children’s Oncology Group study that is led by investigators from St. Jude and came out of research that was done here.” (Read Global Collaborations.)
Although most children with ACC have a mutation in the p53 gene, genetic testing has revealed that Ryan does not have such a mutation.
“This is very good news for Ryan’s future,” Dorie observes.
Children with a p53 mutation have an increased risk of developing another cancer compared to children without a mutation. Since Ryan does not have the mutation, her risk of developing a second cancer is no greater than that of any other pediatric cancer survivor.
“We do understand that this disease has a dismal prognosis, but our Ryan seems to be in the positive minority,” Dorie says, “and we couldn’t be more grateful.”
During a regular clinic visit one summer afternoon, Ryan is clad in a flamboyant cowgirl costume, replete with white satin shirt, gold fringe and faux cowhide chaps. Swinging silver-tipped leather boots over the side of an exam table, she removes her sparkly red cowgirl hat.
“I have some curl action going on over here,” she announces to McGregor, proudly pointing out the wisps of strawberry blonde hair that have appeared since her last chemotherapy treatment. She then proceeds to compliment the oncologist on her choice of clothing.
“I have an 8-year-old fashion consultant,” McGregor says, with a laugh.
The protocol for stage IV ACC is brutal, but Ryan endures it with courage and flair. On the day she is scheduled to begin her eighth and final round of chemotherapy, she chooses an ensemble befitting the momentous occasion—a shimmering fairy costume that features a filmy tunic, diaphanous wings and a garland of flowers encircling her head. When clinicians discover that her blood counts are not robust enough to begin chemo that day, she sheds a tear, knowing that the delay means she will not return home as soon as originally anticipated. A few days later, she finally begins the treatment.
Thus far, Ryan is doing well. “We see evidence that the tumor in her lungs is responding to treatment and that she’s tolerating chemotherapy,” McGregor says.
The Christians admit that excellent medical care is only one of the reasons they love St. Jude.
“It’s not just the medicine and the research,” Dorie says. “It’s the positive attitude, the hope, the children running around having fun and the way that they make us feel that anything is possible.”
That optimism permeates every moment of the family’s day. As predictable as a good-night kiss is their bedtime mantra. Each evening, Dorie and Jeff repeat three simple words to their little one-in-a-million girl: “Ryan,” they tell her as she snuggles beneath the covers, “You are strong, healthy and loved.”
Reprinted from Promise Autumn 2010
Editor's note: Ryan passed away January 24, 2013.
