Pediatric Hematology / Oncology
Hasbro Children's Hospital

Karolain's Story

"Hasbro Children’s Saved My Life and Then Helped Me to Live That Life"

Survivorship program offers physical, emotional support years after patients beat cancer

When she was eight years old, Karolain De Los Santos couldn’t run around like the other kids. In fact, she could barely walk or hold her head up straight. Alarmed, her mother turned to Hasbro Children’s Hospital for help.

Karolain De Los Santos
Now 18 years old and a Bryant University sophomore, Karolain says that the CHAMPS program has been a lifeline for nearly a decade.

A team of specialists soon discovered she had a malignant brain tumor and Karolain immediately began undergoing several months of chemotherapy and radiation treatment.

The treatment was a success; her tumor was reduced to scar tissue. Yet like most cancer survivors – young and old – Karolain learned that cancer’s impact is not temporary.

The disease left persistent cognitive and physical problems, including painful muscle spasms that make it difficult for her to walk.

Thanks to remarkable advances in cancer treatment in recent years, close to 85 percent of children diagnosed with cancer are cured. However, more than 70 percent of survivors will face long-term complications, including heart, lung and kidney problems, as well as cognitive issues.

Responding to a need

That’s why Hasbro’s CHAMPS program is so invaluable. Created in 2005, its full name is the Comprehensive Health Assessment and Management for Pediatric Survivors program. Its mission is to provide pediatric cancer patients comprehensive medical and psychosocial evaluation to ensure that complications are identified and treated.

CHAMPS services typically begin five years after diagnosis, initially with check-ups every six months and eventually just once a year. For many patients, the CHAMPS clinic is a lifelong resource, not only for surveillance and treatment of the late-effects of cancer treatment, but also for educational resources, counseling on prevention of illness, and supportive networking.

Many CHAMPS participants also choose to take part in studies designed to improve the understanding of the long-term health issues associated with surviving cancer during childhood. Research has led to modifications in treatment protocols to minimize late effects of treatment without compromising success rates.

“We aim for wellness moving forward after treatment. Our patients may have many more years ahead to live with subtle or not so subtle effects of their childhood cancer treatment,” said June Bjerregaard, a family nurse practitioner and the coordinator of the CHAMPS program.

Multidisciplinary approach

The CHAMPS team also includes Jen Welch, M.D., a clinical social worker Stephanie Freeman, and pediatric neuropsychologist Christine Trask, Ph.D.

Bjerregaard completes a comprehensive review of every patient’s medical records to learn which treatments the patient received in order to understand the ramifications of his or her cumulative total doses and whether there were any complications. This gives the team insights into potential problems later in life.

“In many cases, we suggest earlier routine screenings to rule out post-therapy complications. For example, women who have received radiation to their chest as children have a significantly greater chance of developing breast cancer. So, we recommend that regular mammograms and breast MRIs begin at 25, rather than 40,” she said.

Bjerregaard added that information is then shared with primary care providers and specialists for continuity, particularly during the transition from pediatric to adult care.

The scope of CHAMPS goes beyond physical health. A cancer diagnosis and treatment can lead to anxiety, depression and post-traumatic stress disorder.

“Patients and families need emotional support when children are diagnosed with cancer and undergo treatment and when they transition to survivorship,” said Freeman.

If needed, patients and families are referred to mental health professionals at the hospital or in the community. CHAMPS also organizes support groups for patients and families.

Enriching patients' lives

Now 18 years old and a Bryant University sophomore, Karolain says that the CHAMPS program has been a lifeline for nearly a decade.

“As a child, when I went back to school after treatment, other kids made fun of me because I could not run or kick a ball,” she said. “So my CHAMPS social worker, Stephanie, took the time to go to school and talk to the kids about what cancer is and how it affected me.”

Because of her disabilities, Karolain said that she never thought that she would go to college. She credits the CHAMPS team for helping her fill out college applications and search for scholarships for people who have had cancer.

Sitting in the university’s library between classes, Karolain said, “Hasbro Children’s saved my life and then helped me to live that life.”