New ball game
A teen-aged cancer survivor takes a shot at research advocacy
Deana Nyenhuis ignored the lump on her neck for a month before she alerted her parents, telling herself that it couldn't be anything serious. Her parents, though concerned, told Deana to keep an eye on it for a while, agreeing that it couldn't be anything all that terrible. Another month went by before Dana had tests that showed her condition was very bad indeed. The doctor called Deana and her parents in to talk. Most of the discussion went over her head, but 15-year-old Deana recognized one word she didn't want to hear: chemotherapy
"I honestly thought it was a mistake, like when you hear about people getting misdiagnosed," said Deana, who at the time was the leading scorer on her lacrosse team and had just returned from an athletic camp. "I thought that they'd called the wrong person on the list."
But they hadn't. Scans of the teen's neck and upper chest revealed that she had an advanced case of Hodgkin's lymphoma, or cancer of the lymphatic system. The first tests showed four tumors in her neck and chest and hundreds of spots on her lungs. "My lungs were just dotted with tumors," Deana said. "It looked like snow on the scans." Further tests found cancer on two ribs and in her spleen, liver, spine and pelvis. Her best chance for survival, the family was told, was in a clinical trial that was looking at new ways to treat Hodgkin's disease.
From player to patient
The American Cancer Society estimates that in 2003 there will be about 7,600 new cases of Hodgkin's disease in this country -1,300 people will die of the disease. But treatments are very effective for this type of cancer, and they're getting better with the help of clinical trials. For patients with aggressive, advanced cancers like Deana, a clinical trial, or research study, offers the greatest hope: immediate access to the latest treatments, including drugs, surgery and other therapies, long before they are available elsewhere.
Fortunately, a clinical trial on the treatment of Hodgkin's disease was underway at Advocate Lutheran General Children's Hospital, a leader in the research and treatment of childhood cancers. Lutheran General Children's Hospital provides the widest range of pediatric sub-specialties in the northwest suburban area, offering specialized care for young children and teens in a child-friendly environment that recognizes the special needs, fears and concerns of children. With the help of philanthropic partnerships with individuals, organizations and corporations, the hospital provides care in more than 30 medical and surgical subspecialties and, most importantly to the Nyenhuises, is a center of excellence for pediatric oncology. Contributed funds also support clinical trials at Advocate Health Care hospitals, including 100 cancer research trials currently underway at Lutheran General Hospital.
The days surrounding Deana's diagnosis were a blur of meetings, tests and biopsies, but she remembers very well how she came to Lutheran General Children's Hospital. Her family doctor had recommended another hospital, but after meeting with caregivers at both locations, the Nyenhuises were swayed by the personal attention they were offered at Lutheran General. The physician who would become Deana's oncologist, Jong-Hyo Kwon, M.D., tipped the scale with a simple promise to the family. "Dr. Kwon told my dad that he would treat me like I was his own daughter," Deana said. "That really made a difference for my dad."
From patient to advocate
Deana enrolled in the trial at Lutheran General and immediately began eight months of chemotherapy. Halfway through treatment, her doctors determined that Deana was responding so well to the chemotherapy that she didn't need to have the radiation therapy planned for her. Yet at the same time she recovered from her own disease, Deana lost two good friends to cancer, two other young people she'd met during her treatment. She considers herself lucky. "My cancer was the most researched," she said. "I am here today because people put time and effort into research."
That's the message that Deana wants to share, now that she's healthy. While childhood cancer is relatively rare, it is still the leading cause of death by disease among U.S. children under the age of 15. Yet nearly 80 percent of drugs used to treat children for cancer have not been tested on children to see if the drug is effective or even safe for younger patients. Deana is bringing attention to the importance of childhood cancer research by organizing classmates to run in the American Cancer Society Relay for Life race, by speaking for the American Cancer Society at events - and by testifying before Congress about the need for children's cancer research. "The whole idea of kids getting cancer…I didn't understand it until I had it," Deana said.
The other students at Barrington High School didn't understand cancer either, until Deana had it. "It was hard to see her sick," said Emily Knight, a lacrosse teammate and life-long friend of Deana's. "But now I'm so proud of her for what she's doing, how she's going out to talk to people about cancer. She's really my hero."
Deana recently graduated from Barrington High, where she was president of the school's Key Club, a service organization. She's also volunteering at a hospital near her home and planning for college and a career in medicine or law - a direct result of her experiences at Lutheran General Children's Hospital and on Capitol Hill. "Having cancer has changed my life," she said. "Cancer has allowed me to help others and has made me a better person. The doctors at Lutheran General saved my life, and now I want to make a difference in other people's lives."
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