National Press Club

Psychosocial counselor offers field guide for families, children coping with serious illness

November 15, 2018 | By Louise D. Walsh | ldwalsh@earthlink.net

Animal puppet Ned joined National Press Club Vice President Alison Fitzgerald Kodjak (l) and author and psychosocial counselor discuss how families cope with severely ill children at a Nov. 13 Club Headliners Book Event.

Animal puppet Ned joined National Press Club Vice President Alison Fitzgerald Kodjak (l) and author and psychosocial counselor discuss how families cope with severely ill children at a Nov. 13 Club Headliners Book Event.

Photo/Image: Noel St. John

Using her decades of experiences with very sick children and their families, author and psychosocial counselor Joanna Breyer brought her comprehensive field guide for helping families cope to a National Press Club Headliners Book Event on Tuesday.

Club Vice President Alison Fitzgerald Kodjak, an NPR News health policy and economics correspondent, introduced Breyer and noted how much guidance exists “when you’re expecting a child but where does a parent turn for self-help when their biggest nightmare turns true?”

Kodjak struck a personal note in her introduction, saying that Breyer’s daughter is a childhood friend and that Alison herself faced health challenges in her teens.

“When Your Child is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who is Very Ill,” offers parents ways to find some control and cope with the impossible. Why did she write it? “I wanted to honor the parents I worked with and pass on to future parents what I learned.” Breyer recontacted many families while writing her book.

An unexpected book event star was Ned, an animal puppet, who she said broke through to children when adults could not. Breyer learned how to employ Ned when kids would refuse to take medicine or communicate with others. She learned this technique from her supervisor who worked with a puppeteer who engaged children who had bone marrow cancer. “I watched her,” Breyer said, and then she incorporated Ned into her own work. She showed the Club audience how Ned might talk with a resistant child.

As for child survivors, Breyer said that conditions vary. It’s often good, but there’s a cohort who don’t do well. “Some survivors with late side effects had a perspective on their situation. They were resilient.” Asked if resilience was about personality or something in the environment, Brewer said it is a difficult quality to characterize in a child: “Maybe it’s a sense of humor, a sense of perspective, a sunny disposition. To some extent it’s the amount of resources and external support.”

One child particularly resistant to treatment eventually became accepting and the tenacity that made her such a major resister helped her to get to college despite disabilities she got from her treatment. She now works with other cancer patients, and Breyer has kept in touch with her through the years.

She is particularly pleased with reactions to her book from pediatricians. “Several are enormously enthusiastic about what they can do” to help these families. Breyer emphasized three points to aid children with serious illness: 1) clear communication so they understand the procedure and why they must do it; 2) an understanding that doctors, nurses and the world around them are people who care; and 3) a surrounding network of support exists for them.

So many online resources exist for parents, she said. Organizations like the Leukemia & Lymphoma Society, the American Brain Tumor Society, and camps people can go to for support. Others provide emergency relief like one that paid for Kodjak’s parents gas so they could take her to doctor’s appointments.

Educated at Oxford and Harvard with a doctoral degree in psychology, Breyer worked with children with cancer and their families for more than 25 years at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. She also worked in the David B. Perini Quality of Life Clinic for survivors of childhood cancer for more than 10 years. Her spouse is Supreme Court Associate Justice Stephen Breyer.