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.

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.

Advancing Pediatric Cancer Treatments

An interview with Thomas Renaud, M.D.

Please describe the strides made in childhood cancer treatment?

We have a very high cure rate for childhood cancers, such as lymphoma and leukemia. We cure 80-90 percent of childhood leukemia and lymphoma with chemotherapy. There is a 90-percent cure rate for the most common childhood cancers, but unfortunately, not for all.

How has treatment safety evolved?

Remember that in the 1940s when chemotherapy was first used in treating kids the focus was on curing these kids. By the 1960s, the medical profession realized that there were serious side effects to treatment in kids, so they started to investigate.

There have been some significant studies done in the last 10 years that have helped to identify common side effects of drugs that we use to treat common cancers. For example, we know that a class of drugs that we use often affects the heart years after treatment. So we watch these kids closely for signs of cardiac disease.

How has treatment changed to cut down or eliminate later treatment effects?

Patients are started on chemotherapy at lower doses. If we can use a lower dose, we will stick with that in the hope that there won’t be later complications. But sometimes that doesn’t work and we have to go to high doses.

What excites you about treatment going forward?

One of the new treatments that is evolving is immunotherapy. Simply put, this therapy stimulates an immune response in the body, essentially setting up monoclonal antibodies — an immune response that can block certain protein substances common in cancer.  We are now using immunotherapy in treating lymphoma with a high rate of success. We hope that someday it will be the treatment of choice for all types of cancer, both pediatric and adult.

Dr. Renaud is a pediatric hematologist and oncologist at Hasbro Children’s Hospital and a member of the CHAMPS team.

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 Tom Renaud, M.D., 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.”