It’s about 8 o’clock and my day is starting to wind down. I’m sitting on the couch, relaxing and getting ready to watch some football and scroll through my iPhone. The youngest of my three kids pops her head into the family room and sees me nestled under a fleece blanket. Next to me is our new puppy chewing on his stinky rawhide. It obviously looks super inviting to her, because she quickly ditches her iPad and jumps on the couch with me. Once she’s settled in, her sweet 12-year-old girlie voice asks me, “How was your day today, Mom?” That’s the kind of kid she is. I know, I got lucky. My mind quickly scans through all the day’s activities, and I say “You know what? It was pretty great.  I was able to help a mom whose son was just diagnosed with Gorlin Syndrome. He’s around the same age as you.”
She hesitates for a few seconds, which I assume was the time she needed to process what I just told her, and then replies, “How did you help her?” I began to tell her what happened.  “A nice mom called on the BCCNS Alliance phone and needed some support this afternoon. I could tell by her voice that she was emotional and overwhelmed.  Her youngest child just received a confirmed diagnosis of Gorlin Syndrome.” I told her about how this mom had been scouring the internet for information and her thoughts and feelings were in a tailspin. Her most immediate worry was how was she going to explain this diagnosis to her son. The word cancer was freaking her out, so she couldn’t imagine how he was going to react.  We talked for about 45 minutes and I was able to answer a lot of her questions and share some of the stories and experiences I’ve learned from other members. I could tell she was starting to feel better.
But then it gets better. I asked her if she would like to talk with another mom who’s gone through this experience already. She immediately replied, “Yes, that would be tremendous,” and I could sense her relief and gratitude. After we hung up, I immediately logged into the BCCNS Alliance database and made one phone call and sent one email. The phone call was to an older mom who lived in the same area. The email was sent to a mom whose son was the same age and diagnosed two years ago. Within one hour, these wonderful ladies replied and reached out to the new mom. I’m not kidding. It was literally one hour. It was amazing.
I explained to my daughter, “Here is this mom of a newly-diagnosed child who will be living with skin cancer and other chronic issues for the rest of his life, and in just one phone call to the BCCNS Alliance, her weight was lifted. She learned she was not alone and there was a community of support to help her and her family navigate this new and rare diagnosis.”
It then occurred to me that this story was too good to keep to myself. I needed to share it with others in the BCCNS Alliance to show how important this organization is and why it matters. So here it is.