Today I joined the Histiocytosis Association of America. And I cried. It makes it so real. I think that because LCH was our best case scenario that we underestimated the disease. Before the official prognosis I had only done a small amount of research. You know how it is. You go online and you see all sorts of horror stories and you scare yourself to death. I wasn't going to do that. I didn't allow myself to dig very deep, before we knew for sure. Well, now we know and I have done some digging. While I am so happy that the tumor wasn't cancer, there isn't much relief in knowing that my daughter has this disease. It is not a disease to take lightly and it very well may be something that she deals with for the rest of her life.
In just under two weeks we go to the oncologist and I am expecting him to treat CJ with chemo. From all of the reading I have done, I just am expecting it. I have focused my online research on blogs that parents just like me, created to share their stories with their families and friends. Most of these stories, include chemo. And I am having a very hard time wrapping my head around this. I think that I had a false sense of being done, after the surgery. The tumor was gone, we came home, it's all good...right? Hmm, not so much.
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