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.

Families from all over the world stay at the Children’s Inn during treatment or follow-up. The kitchen areas, the large open-air playroom, and the computer room are frequently places to meet parents or their kids and siblings, and the Inn’s supporters are always hosting game nights or family-style dinners. Everyone at the Inn, the managers and volunteers, shuttle drivers and house staff, makes a real effort. Our son feels completely at home staying there.

Parents are horrified by acute postoperative recovery and afraid for their child’s life; disoriented by the “foreign land” of the hospital: new language, seemingly arbitrary rules, strange sounds and smells, rotating teams of doctors and nurses; confused by medical and treatment decisions that need to be made quickly; disheartened by their feeling of incompetence; isolated and alone; angry at God, at themselves and even at the sick child, for which they immediately feel guilty. A family whose child is newly diagnosed with a brain tumor is hit with these emotions almost immediately. Most parents don’t realize these reactions are normal, and their sense of desperation is enhanced by the conviction that they aren’t “doing a good job handling things.”

Meeting other families who are going through the same thing, or who have already been through it successfully, can greatly relieve the stress of a family new to the world of pediatric brain tumors. The emotional benefits are obvious, and much needed information can be shared. Families who belong to a support group have the means to reorient themselves to the new world they find themselves in. More experienced families can help them learn the language, rules and customs, and offer an example of a functioning family unit that has successfully navigated diagnosis and recovery. Firsthand, from-the-trenches strategies for dealing with this disease can be invaluable, and what a relief to know that you are not alone!