Many parents of children with cancer experience deep loneliness after the first rush of visits, cards, and phone calls ends—when the rest of the world goes back to normal life. Families join support groups to lessen this isolation, share suggestions for dealing with leukemia and its treatment/side effects, and talk to others who are living through the same crisis. Coping with a life-threatening illness requires a unique perspective—the ability to focus on the grave situation at hand while balancing other aspects of daily life. In support groups, many families get help finding this emotional balance. Just meeting people who have lived through the same situation is profoundly reassuring.

The group was a real lifeline for us, especially when Justin was so sick. We looked forward to the meetings and were there for every one. It was a real escape; it was a place to go where people were rooting for us. People from the group would always swing by the ICU to see us whenever they were bringing their own kids in for treatment. We amassed a tremendous library of children’s books that the group members would drop off. The support was wonderful.

For the parents of a child with cancer, the issues that other parents in their social circles are dealing with seem light years away. But the moms and dads in the kitchen at a Ronald McDonald House or the ped-onc lounge can offer practical advice about things such as mouth sores and low blood cell counts. They understand each other’s feelings and emotions, because they are sharing the same experience. It is a bond that cuts across all social, economic, cultural, and racial differences.

My 2-year-old daughter, Gina, was diagnosed one week after I gave birth to a new baby girl. I remember early in her treatment, I was sitting with Gina on my lap, and my husband sat next to me, holding the new baby. The doctor breezed in and said in a cheerful voice, “How are you feeling?” I burst into sobs and could not stop. He said “Just a minute” and dashed out. A few minutes later a woman came in with her 8-year-old daughter who had finished treatment and looked great. She put her arms around me and talked to me. She told me that everyone feels horrible in the beginning; and it might be hard to believe, but treatment would soon become a way of life for us. She was a great comfort, and of course, she was right.

There are many different types of support groups, ranging from those with hundreds of members and formal bylaws to three moms who meet for coffee once a week. Some groups deal only with the emotional aspects of the disease, while others may focus on education, advocacy, social opportunities, or crisis intervention. Some groups are facilitated by trained mental health practitioners, while others are self-help groups led by parents. And, naturally, as some members drop out and new families join, the needs and interests of the group may shift.

Our Tuesday gatherings were an anchor for us. It was a time to meet with parents who truly understood what living with cancer meant. These parents had been in the trenches. They knew the midnight terrors, the frustrations of dealing with the medical establishment; after all, it was an alien world to most of us. They knew about chemo, hair loss, friend loss, and they knew the bittersweet side of cherishing a child more than one thought one could cherish anyone. We gathered to cry, to laugh, to whine, to comfort one another, to share shelter from a frightening world. It was a haven.

Support groups link parents in similar circumstances to share practical information, provide emotional support, give hope for the future, and truly listen and empathize. It is important to remember, however, that support group members are not infallible. One person may say something thoughtless or hurtful. Someone else may provide incorrect information. It is best to accept the support in the spirit in which it is given, but to always take any concerns or questions you have to your child’s doctor or nurse practitioner.