Debby Rosoff was 36 years old when she was diagnosed with breast cancer in 1996. At the time, she and her husband, Larry Katznelson, were raising two young children, Ethan (then 4 years old) and Andy (then 2 years old). Debby lost her battle with the disease five and a half years later.
Throughout that time, Debby and Larry struggled to live their lives as fully and as well as they could, and tried to maintain a healthy, functioning family life. It was important to ensure that their children were coping during those difficult times.
Debby and Larry needed to know how to talk with them in an age-appropriate way at many points during these years, both to provide information and answer their questions.
"One of the most difficult moments occurred after Debby's cancer had metastasized [spread] and she was very sick," recalls Larry. "The children asked her, 'Mom, are you going to die?' and we didn't know what to say."
Important feelings were often expressed by the children's behavior, and sometimes it was hard to know how to react, as well as what to say.
"We also had to decide what to tell their teachers and friends, and to answer questions about what people could do to help," Larry adds. "We had to know when she and I needed help, and how to find it."
Larry also craved information for himself. "As the well spouse, I wanted to be as supportive as possible to her," he says. "I also needed to know how to deal with my own emotions about possibly losing my wife, whom I loved deeply and was my best friend as well as the mother of our children."
Debby and Larry often felt the need for information about the myriad issues that affect a family when a parent has cancer. Although both Debby and Larry had access to professionals who offered sage advice on how to support themselves and their children, it was often hard to track down and sort through the resources they needed.
Moreover, they were frequently too emotionally and physically exhausted from juggling the demands of raising young children, maintaining two careers and coping with a serious illness to spend time searching the Internet, visiting libraries, poring through books, or attending support groups.
After the recurrence of her cancer, Debby began treatment at Dana-Farber Brigham Cancer Center. There, she and Larry had access to the Blum Patient and Family Resource Center, as well as support from Debby's oncology team.
They felt lucky to have a caring, sensitive team of care providers, whom Debby fondly referred to as her "Dream Team." However, there was often not enough time with her treatment team to address issues that focused on the needs of the children.
Following Debby's death, the family's emotional needs changed focus, but they still needed to be addressed. "When Debby passed away, I still needed information about how to help the boys and myself deal with this devastating loss over the short and the long term," recalls Larry.
Larry and members of Debby's family were determined to find a way to keep her memory alive. Debby's family approached the Family Connections Program at Dana-Farber Brigham Cancer Center with a vision of developing a program that could provide easily accessible information to other families facing a parent's illness.
The Family Connections website, in memory of Deborah L. Rosoff, is the result — a unique resource that brings together a wealth of reliable information for parents with cancer and their families.
The site was also designed to give parents with cancer and their families a way to share their stories and ideas, as well to receive much-needed support from those who understand the challenges firsthand.
"Debby was, and will always be, my hero," said Larry. "This website is dedicated to her: it is our gift to Debby and, in return, her gift to others. We want to make it easier for families to find the information and support they need when dealing with the enormous demands of being a parent with cancer.
"We hope it will help ease other families' burdens, much as Debby's love and courage helped ease ours."