The countless heartfelt consultations, gestures, and visits from the nurses, doctors, hospital staff, and program developers were amazing. They gave me strength and they guided me through this. I was not in control. I was lost in a world I did not know and had no experience with. But they gave me hope, they told me I could do it, and they kept me informed and made me part of their process. The parent support group was instrumental in that movement from helpless to hopeful. I was not alone and I realized that no matter how bad we had it, we were lucky that our children were alive and fighting. I had to pull myself and our lives back together. We built a life and routines around this unfortunate situation and we began to adapt.

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. They always stopped by to visit and chat. We amassed a tremendous library of children’s books that the group members would drop off. The support was wonderful.

I felt like I was always putting up a front for my family and friends. I acted like I was strong and in control. This act was draining and counterproductive. With the other parents, though, I really felt free to laugh as well as cry. I felt like I could tell them how bad things were without causing them any pain. I just couldn’t do that with my family. If I told them what was really going on, they just looked stricken, because they didn’t know what to do. But the other parents did.

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.

My 2-year-old daughter was diagnosed 1 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.

Our group is very informal. We do have two social workers who are considered the facilitators and are there as resource persons. We just talk about whatever anyone wants to discuss. Occasionally we have invited speakers in. I remember having a psychiatrist discuss stress management, and we also had a talk on therapeutic massage. We have formed close friendships from the group, and we still go twice a month, even though our daughter is a year off treatment and doing great. I think our presence comforts the new families.