Thriving! Program Supports Survivorship for Children During and After Cancer Treatment

Tremendous strides have been made in the treatment of pediatric cancers, and more children are surviving than ever before. But success sometimes comes at a cost. The Children’s Cancer Survivor Study (CCSS), an analysis of more than 10,000 adults who were diagnosed with cancer during childhood or adolescence between 1970 and 1986, has reported that more than 60 percent of survivors experienced chronic health problems later in life. These “late effects” included heart disease, lung scarring, infertility, and second cancers due to radiation therapy or chemotherapy.

Nurse Katy Donahue is one of the coordinators of the Thriving! program for survivors of childhood cancer. The good news is that the CCSS findings have been used to tailor today’s pediatric cancer treatments to reduce the risk of such late effects without compromising effectiveness. For example, radiation therapy to the brain — once a standard treatment for acute lymphoblastic leukemia (ALL) to treat possible cancer spread to the nervous system — is now rarely used because it was found to increase the risk of developmental delays in the child; fortunately, chemotherapy has replaced the need for radiation. Additionally, doctors are more aware that individuals treated for cancer when they were young require special follow-up and monitoring as adults.

“As we increase the number of children with cancer whom we cure, the number of adults who are childhood cancer survivors continues to increase,” says Linda Granowetter, MD, Director of the Stephen D. Hassenfeld Children’s Center for Cancer and Blood Disorders at NYU Langone Medical Center.

To address the survivorship needs of Hassenfeld Center patients, a program called Thriving! was created. The long-term follow-up program was established with a generous gift from Abbe and Brian Walter, whose son, Ben, was successfully treated at the Hassenfeld Center starting in 2003, when he was diagnosed with ALL at 23 months of age. William L. Carroll, MD, NYU Cancer Institute Director, directed Ben’s care. The Making Headway and Tom Coughlin Jay Fund foundations have provided additional funding.

The Thriving! program will provide specialized care to nurture and heal all aspects of a child’s or adolescent’s physical, cognitive, and emotional development from the first day of care until long after treatment ends. The program will draw upon the unique strengths of NYU Langone Medical Center’s comprehensive services for pediatric cancer patients.

“Childhood is about social and emotional growth and education — crucial areas affected by cancer,” explains David Salsberg, PsyD, who is overseeing the psychological and neuropsychological components of the Thriving! program with Hassenfeld psychologist Laura Tagliareni, PhD, and Preeti Saigal, PhD, of the Rusk Pediatric Psychology Service. “How we prevent, monitor, and address issues that can arise will positively impact a child’s life forever. Now that these children are surviving, it is our charge to assure that they will thrive.”

Recognizing the Need

When Ben Walter was diagnosed with ALL, he was a spirited toddler who loved putting together puzzles and building with blocks. Three years and two months of chemotherapy cured him of the cancer. Today he is a 10-year-old fourth grader in New Canaan, Connecticut, who excels in school.

After treatment, however, Ben’s parents noticed subtle but significant changes in his ability to think of words and in his processing speed, as well as difficulty with fine motor skills (holding crayons or pencils, building blocks, etc.) and gross motor skills (such as coordination, balance, strength, and flexibility). As a clinical psychologist, Abbe Walter realized that her son needed annual neuropsychological evaluations, occupational and physical therapy evaluations, and ongoing rehabilitation and treatment in these areas from professionals familiar with pediatric cancer — a challenging task that they coordinated themselves. Services were available, they found, but not in a formal, centralized way.

Abbe and Brian Walter also wondered, what about parents who don’t have the educational background or resources that they have? “As we thought about the needs of our son, we thought about survivorship issues for all children,” says Mr. Walter, a partner at a boutique investment bank. “What would people who don’t have Abbe’s knowledge do? We place so much focus on curing a child of cancer, as we should, but life after cancer is important as well.”

Brian and Abbe Walter made a generous donation to support the Thriving! program for pediatric cancer survivors. “Dr. Carroll and the whole Hassenfeld staff are amazing, and we always wanted to find a way give back to NYU,” adds Dr. Walter. “It isn’t over when treatment is over. We decided to support the Thriving! program to help address the effects of treatment and the transition back to school, and to help survivors learn how to be advocates for themselves.”

The Hassenfeld Center has always provided survivorship services for patients and their families, but the Thriving! program unifies them in a formal initiative. “We are ensuring that all of our survivors have the resources they need to have an optimal quality of life,” explains Katy Donahue, RN, CPHON, Nurse Coordinator at the Hassenfeld Center, who, with Erin Hartnett, DNP, APRN-BC, CPNP, is coordinating the Thriving! program. “To reduce the possibility of late effects, we are tailoring treatment from day one, with an overall focus on wellness.”

Ms. Donahue has first-hand experience in this area, and not just as a nurse. She is a 30-year survivor of osteosarcoma, diagnosed with bone cancer in her left hip at age three and successfully treated with chemotherapy and limb-sparing surgery. When she was 24, a doctor asked her if she ever had an echocardiogram (an ultrasound of the heart). She was unaware her cancer treatment made her a candidate for future heart disease, and that the typical risk factors for the illness — such as smoking — could adversely affect her even more so than her peers who were not treated for cancer. “It’s important for survivors of pediatric cancers to know what they need to do to stay healthy as adults,” Ms. Donahue says.

The Thriving! program will have a positive, profound, and sustained impact on patients as they grow from childhood and adolescence into adulthood and beyond. Says Dr. Carroll, “This program is designed to reduce the burden of cancer on patients and their families by promoting wellness and improving quality of life from day one until long after treatment has ended.”

Thriving! Program Services: Care and Aftercare

From the first day a child is diagnosed with cancer, the Hassenfeld Center provides the care, information, and resources young patients need to ameliorate or prevent later complications. The Hassenfeld team employs innovative interventions and services such as nutritional counseling for lifelong wellness; early physical and occupational therapy for patients at risk for nerve problems or disability; early neuropsychological evaluations for patients at risk of cognitive impairment; and early intervention and school programs.

The staff of the Thriving! program provide specialized care to nurture and heal all aspects of a child's or adolescent's development during and after cancer treatment. After treatment is complete, survivors are cared for and tracked for at least ten years. Each survivor meets with members of his/her individualized Thriving! program team, which includes the patient’s personal physician or nurse practitioner, a psychologist, social worker, nutritionist, recreation therapist, a medical librarian, a teacher, a fertility specialist, and a physical and occupational therapist as needed. Moreover, patients and their families can meet with all members of the team on the same day, to prevent the need for repeat visits to the center.

Because the Hassenfeld Center draws on the unique strengths of NYU Langone Medical Center’s clinical, educational, and psychosocial programs, the depth of services offered at the Thriving! program is expansive, and includes:

  • Psychological and neuropsychological screening and services to assess and address the emotional, social, psychological, and developmental needs of each child. A particular strength of the program is support for adolescents and young adults, who may feel like they “lost” their teenage years because they were being treated for cancer. A tremendous amount of resources are also put into solidifying ongoing learning, remedial, and treatment programs for these children, in and out of school.
  • Educational support, with a teacher working with children during therapy and after treatment, to ensure they receive the support they need at school or with a tutor.
  • Resource support, with a medical librarian who helps families access resources about the patient’s follow-up needs.
  • Recreation therapy and nutritional counseling, with a focus on helping patients achieve and maintain a healthy lifestyle through physical activity and a healthy diet.
  • Physical and occupational therapy to improve gross motor and fine motor skills that may be affected by cancer treatment. Patients benefit from a unique relationship between the Hassenfeld Center and NYU Langone’s Rusk Institute of Rehabilitation Medicine.
  • Support groups and other events tailored to the needs of children and adolescents who have completed treatment, and their families.
  • Fertility services, since some cancer treatments raise the risk of infertility. NYU Langone Medical Center is home to one of the most renowned infertility programs in the country. “We have the resources to offer the most cutting-edge methods of fertility preservation, such as egg freezing, to our patients,” notes Dr. Granowetter.
  • A research component of the Thriving! program aims to better understand late effects of cancer care, such as obesity and infertility, and to refine the long-term care guidelines for survivors.

Each patient also receives a binder called the Passport to Care, which includes a detailed treatment history and follow-up guidelines. This binder contains details about which drugs they received and at what doses, what kind of surgery they had and when, and how much radiation therapy they received, if that was part of their care. “This information is critical to ensure continuity of care. We encourage and empower patients to become strong advocates for their self-care,” says Ms. Donahue.