Web site helps parents with cancer converse, connect with their children
Debby Rosoff (right), Larry Katznelson (with sons Ethan and Andy)
When Deborah Rosoff was in the midst of a five-year battle with breast cancer in the late 1990s, she and her husband, Larry Katznelson, struggled often about how to explain her illness and treatment to their two young sons. Although the Boston couple felt great kinship and support from Debby's caregivers at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC), few resources were available that focused on the myriad difficulties affecting families like theirs.
Katznelson faced new challenges along the same vein after Debby died at age 41 in December 2001. There was plenty of general bereavement help available, but little that dealt with explaining the death of a parent to young children. Although he was himself a physician at Massachusetts General Hospital with access to the best counseling and insights, he still grappled with how to help his boys - then 9 and 7 - through their grief while handling his own. Nobody, it seemed, had answers to the questions that kept him up at night.
He was far from alone. According to the National Cancer Institute, of the 1.4 million adults in the United States who will be diagnosed with cancer this year, nearly 25 percent of them will have a child 18 years or younger. Now, thanks to the work of Katznelson, his family, and DF/BWCC staff, these parents have resources they can tap into late at night or anytime.
A new Web site (www.dana-farber.org/familyconnections) launched at the end of last year and dedicated to Debby Rosoff's memory brings together a wealth of information to aid parents with cancer and their families. The site provides guidance on how to talk about the disease with children of all ages, from preschoolers through teenagers, in a variety of areas. There are also tips for creating a support network (complete with a sample calendar to use for assigning helper tasks), and online links to dozens of kid-friendly Web sites, videos, and books on the topic divided by age groups.
"This is our gift to Debby and, in return, her gift to others," says Katznelson, now living in his native San Francisco with his sons and working as an endocrinologist at the Stanford Comprehensive Cancer Center. "We're trying to reach out to other families and touch on their individual issues with an easily approachable resource."
Larry Katznelson with his sons Ethan (left) and Andy today
Late-night reading
Funded by gifts from the couple's family and friends, as well as from other DF/BWCC patient families and the Good Samaritans Foundation, the Family Connections site was developed with input from Katznelson by Dana-Farber's Care Coordination and Communications departments. It encompasses insights from clinical professionals, patient and family educators, child development specialists, caregivers, patients and children, melded into a single "voice" aimed at providing expertise and guidance as well as hope.
Already, families are finding it useful. Stephanie MacEwen of Wrentham, Mass., who has two teenage daughters, a 9-year-old son, and metastatic colon cancer, says she "wishes it had existed when I was first diagnosed two years ago. It makes you feel like you're not alone with all these thoughts going through your head. Having everything broken up by age helps when you have several kids, and the patient stories are very inspiring. If something comes up now, I know just where to go."
Even those well versed in cancer care can gain plenty of insights. Usha Thakrar of Dana-Farber's Perini Family Survivors' Center, whose husband, John Farr, has had three bouts with Hodgkin's disease and lymphoma and two stem cell transplants in the past three years, found the site "thoroughly useful" in talking with their 6-year-old son, Kavi.
"Being a staff member, you learn to have a very professional demeanor about this stuff, but when it comes to your own family and children, you need all the help you can get," says Thakrar, administrator for the adult and childhood cancer survivor clinics at Dana-Farber. "The material really resonated with me, especially the parts about doling out information to your kids in small chunks. It was also great to be able to look it over when Kavi was asleep; I could read things carefully and let them sink in."
With or without guidance, having such conversations is never easy. While experts agree it is best to be up front - children will sense something is wrong, and it's better that they hear it from you rather than others - the prospect of answering questions like "Mom, are you going to die?" is overwhelming for many parents.
"In addition to helping them feel more prepared for difficult questions like this, parents tell us the site is helping them understand how to be proactive in supporting their children and keep channels of communication open with them," says Nancy Borstelmann, MPH, MSW, LICSW, director of the Family Connections program. Besides the Web site, the program offers additional resources to help families cope, including age-appropriate backpacks with portfolios of information for children to keep, detailed packets for their parents, an outward-bound program for teenagers and bereavement packets (when necessary).
Katznelson, Borstelmann and their collaborators have further plans for the site, including sections focused on grieving and on helping preschool, elementary and high school educators handle the special concerns children of cancer patients may have in the classroom. In the meantime, the project has truly become a family affair: Katznelson's 13-year-old son, Ethan, is sending out letters to webmasters of other sites asking them to link to Family Connections (with an excellent success rate), while 11-year-old Andy has already asked what he can do. "I like the idea that we're helping both parents and children who have to go through hard times like we did," says Ethan.
It's clear that the site will be serving what their dad sees as its main goal long into the future.
"We hope it will help ease other families' burdens," says Larry Katznelson, "much as Debby's love and courage helped ease ours."
- Saul Wisnia and Janet Haley Dubow
