March 11th, the day after the diagnosis was determined was not easy. We spent our time trying to gather information, informing loved ones, and working through the emotions of what having this disease meant for our child and our family. As the day progressed we were able to lift ourselves out of the emotional toil that had claimed us the first 12 hours after the diagnosis and begin to focus on potential positives.
We recognized that this disease is dangerous, and that the treatment regimen would be difficult and had risks of it’s own. The website that Dr. M offered as a resource, cautioning us that the internet in general is a dangerous place in terms of medical information, was helpful. Through http://histio.org we were able to learn a little more and see that there were in fact survivor stories to be had. Our first meeting with Dr. M left us feeling without such hope, not because of his presentation but because of the overwhelming fact of the disease and what it meant. Seeing hope so soon was not reasonable for us, but as time passed and we learned more and spoke to people who were deeply concerned, hope became a more accessible emotion.