Fellow traveller

Today was a red letter day. Another mother contacted me through the blog - Jodie also has a child with Infantile Fibrosarcoma. Gavin was diagnosed when he was only three weeks old and is about to celebrate three years in remission. Yay! She still occasionally googles the term, and found a link that led to this blog.

We spent over an hour on the phone tonight, comparing stories and Jodie giving me a lot of perspective and hope. Childhood cancers are rare (1 to 2 children develop the disease each year for every 10,000 children in the United States). Soft tissue sarcomas are rare among the childhood cancers - to put it in perspective, there are only 350 cases of Rhabdomyosarcoma (the most common soft tissue cancer in children) diagnosed in the United States each year. Infantile Fibrosarcoma is extremely rare, even among the soft tissue cancers. One of the few articles we've been able to find on it was a study of 11 infants who had been diagnosed with it between 1982 and 1998. That's less than one case per year, and that certainly reflects the experience that Jodie and we have shared. When she was dealing with Gavin's treatment, she felt alone. Other childhood cancer patients had support groups and organizations, and most importantly, a community of people who went or were going through the same experience. She eventually found one other mother who's son had fought Infantile Fibrosarcoma years before. Now years later, she found us. I don't know if there is any way to find out, but I strongly suspect that Alan is the only patient fighting this particular form of cancer at this time.

I am extremely grateful to Jodie for reaching out to me. She is following Mr. Cheeks Goes to the Hospital now, so please, everyone send out thanks and good wishes to Jodie, Gavin and his big brother Nicholas.