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    Helping Survivors Thrive

    Ten-year-old Rodrick Thompson of Memphis loves playing dodge ball, basketball and hide-and-go-seek. He loves eating pizza and reading books. And he loves coming to St. Jude Children’s Research Hospital for his yearly checkups.

    For as long as he can remember, Rodrick has been a patient in the “A” Clinic at St. Jude, where he has received treatment and follow-up care for Hodgkin disease. But today he begins a new adventure, visiting the After Completion of Therapy (ACT) Clinic for the first time.

    5:15 a.m.

    Rodrick hops out of bed and dons clothes carefully chosen for this special day. He waits impatiently for the 7 a.m. arrival of the St. Jude shuttle. “I like going to St. Jude because when I was sick, I went there and they helped me out,” Rodrick explains. His mother, Ynetta Thompson, says he likes to go because “the nurses kiss on him.”

    Rodrick was a toddler when he made his first trip to St. Jude. He had Hodgkin disease, a cancer rarely seen in children under the age of 5. After two years of treatment, his disease went into remission, and his checkups occurred every three months, then every six months, and then every year. Now the young cancer survivor is moving to the ACT Clinic, where he will receive care until he is 18 years old.

    7:45 a.m.

    Rodrick, his mother and his brother, Jeramie, arrive at the hospital and proceed through Patient Registration to Assessment Triage, where Rodrick endures a routine needle stick without flinching. “Now that I’m big, I don’t cry when they stick me,” he boasts.

    Rodrick has grown and matured during the last seven years. In the past 40 years, St. Jude has grown and matured, as well. In 1962, less than 20 percent of patients survived treatment; today, more than 70 percent of childhood cancer patients live to adulthood. Through the ACT Clinic, St. Jude provides services to survivors, while gleaning research findings that will help tomorrow’s patients. “Unlike other institutions, St. Jude follows its patients as they age,” says Melissa Hudson, MD, clinic director. “That makes us different. We are able to monitor patients over long periods of time and get very accurate assessments on long-term outcomes.”

    9 a.m.

    Deep in concentration, Ynetta fills out an ACT questionnaire that includes detailed information about Rodrick’s health status and family history. Meanwhile, Rodrick debates what he wants to be when he reaches adulthood. Should he be a police officer or firefighter?

    Rodrick puts off the career decision when he hears his name called over the PA system. Dorothy Rogers in Echo/EKG is ready to test his heart function. When that activity is finished, Rodrick moves to another room where his lung capacity is evaluated. Next, he progresses to X-ray, where he stands as still as a statue during lung X-rays. Hudson will use these and other test results to determine whether Rodrick’s past therapy is causing adverse effects and to predict problems that may arise.

    11:15 a.m.

    With the tests completed, Rodrick and his family go meet their ACT social worker, Sally Wiard. “We’re happy to have you in the ACT Clinic. It’s a really good place to be because that means you’re a survivor of cancer,” says Wiard, who will delve into Rodrick’s emotional, social, educational and financial concerns. She will also spend hours discussing community resources with him.

    “Before you graduate from the ACT Clinic, it’s important that you learn all the things you need to know to be a healthy survivor of cancer,” she says. Wiard gently quizzes Rodrick about his lifestyle, emphasizing the importance of making healthy choices. Eventually, she will help him explore health insurance and access to medical care—two issues that often plague cancer survivors. “Do you think you want to go to college one day?” she asks. “Yes,” he replies. “Well, there are some scholarships for people who are cancer survivors, and we’ll be sure and talk about them,” she promises.

    After the social work appointment, the Thompsons greet Margie Zacher, data coordinator for the St. Jude Longterm Follow-up Study. She offers Rodrick the opportunity to participate in the study. “We not only track your progress to give you good quality care, but we also use information from the study to continue our research into late effects,” she explains. Rodrick and his mother agree to participate and sign release forms.

    Finally, the moment arrives when they meet Rodrick’s new doctor. Before performing a physical examination, Melissa Hudson spends a half-hour discussing Rodrick’s medical history and his prospects for the future. Hudson and Rodrick peruse his medical file, discussing radiation fields and smiling over photos of Rodrick that were taken in 1995. Hudson assures him that the ACT Clinic staff will closely monitor his heart, lungs and thyroid gland, the three organs most likely to be affected by his past treatment. “We’ll be checking your progress every year to be sure that you are growing normally and go through puberty on time,” Hudson says. “We’re also going to teach you about what you can do to stay healthy after cancer therapy.”

    2:15 p.m.

    At the end of a busy day, Rodrick and his family board the bus to go home. Next year, they’ll come back again for another ACT checkup. In the meantime, ACT staff members will continue working with the hospital’s 3,800 survivors, conducting research that may someday help Rodrick.

    One of the ways St. Jude is collecting that information is through their participation in the Childhood Cancer Survivor Study (CCSS). More than 1,300 patients who came to St. Jude between 1970-86 have joined CCSS, the largest childhood cancer survivor study ever conducted. This project encompasses more than 14,000 former patients from 25 institutions. In addition to educating survivors and their community physicians, Hudson and her CCSS colleagues are acquiring new knowledge about the long-term effects of cancer and therapy.

    “I think it’s important for institutions to combine their expertise and their patient populations in research initiatives like this one,” says Hudson. “This study will give us a comprehensive look at what is happening to the survivors throughout the country.” Hudson also uses the forum to share St. Jude educational materials and programs with patients nationwide.

    February 2010

    If all goes as planned, Rodrick will graduate in 2010 from the ACT Clinic. The day he becomes an alumnus, he will receive a special book called a Personal Health Record. St. Jude is the first center in the United States to present these books to alumni. Rodrick’s book will include treatment summaries, copies of medical reports, recommended timelines for tests and screenings, and healthcare guidelines specifically created for him. The document will give his physicians easy access to his medical information and to St. Jude. The book will also provide follow-up forms and phone numbers that Rodrick can use to keep in touch with St. Jude.

    Armed with his ACT education and his Personal Health Record, Rodrick can expect years of productivity as a healthy survivor of childhood cancer.

    Reprinted from Promise magazine, spring 2002

     

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