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Re: Nikki Update
Submitted by Carol <carolwrede@msn.com> on 21/Aug/2008 in reply to Nikki Update posted by Sandy on 21/Aug/2008
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Sandy,
My son Steve was diagnosed with FHC in December, 2004. He had never been sick in his life, with the exception of some early ear infections and head colds. He was in the navy, and was told on his 19th birthday by the oncology team in Bethesda, MD, that he had 3 months to live. It was devastating to him. We brought him home to Colorado Springs, and the navy helped facilitate involvement with the University of Colorado Medical hospital in Denver. He had a wonderful pediatric oncologist. She was hesitant to give us a time frame, even tho we asked several times. She did not want to give up hope, nor wanted him to give up hope. Hope is EVERYTHING. He went through experimental chemo, etc etc, until she finally told him there was nothing more she could do, and that the chemo was actually hurting him. Steve kept believing he was going to beat this disease until then, and then he just gave up. We knew he was dying, but we hung on to every second.
I know it is very very frustrating, but I think no one will tell you because there has been such a variance of life expectancies with this disease. Steve lived 5 months after he was diagnosed, and the hospice personnel were amazed, but said it was because he had a strong heart. Others have lived 12-14 years after diagnosis. Steve was not able to get any resections, which seems to make a big difference. He died May 3, 2005. There is not a day that goes by that I don't think about him, and we still can't believe at times that he is actually gone. I think we are still in shock.
After going through this, I would say, Don't ever give up. That's the worst thing you can do.
And please know I will be thinking about you, Nikki, and your family. Somewhere, some day, there has to be a cure. Maybe it's tomorrow.
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