Topic: Father just passed away

I have recently lost my father to this terrible disease. He was 49 when he died and he left behind my 46 year-old mother, me (25), my two younger brothers (21) (16) and my younger sister (20). He was only diagnosed 5 months before his passing. I visited this website from time to time, but found it hard to read some of your stories, mostly because your experiences mirrored mine, and I knew it was only a matter of time before my father would be gone. My dad was the the strongest person that I ever knew, and seeing him become debilitated from cancer is the hardest thing I have ever experienced. I want to continue with my father's battle, he wasn't ready to die and he didn't stop fighting until his last breath. I wonder if any of you know of resources that I can use to learn how to start up events and/or participate in events that help support education and research for cholangiocarcinoma. This may be a rare cancer, but each person it hurts matters and I want to help prevent future fathers and mothers, brothers and sister, aunts and uncles, sons and daughters, and grandfathers and grandmothers from suffering the horrible, untimely undignified death that my father bravely endured.

Re: Father just passed away

Im so sorry for your loss
I  found it very hard to read some of the posts aswell when my father was first diagnosed.
It always seemed that no matter what anyone tried the end always played out the same.
My family and I are fighting this tooth and nail.
We have had success so far but we know its a never ending battle.
If you do come across and organizations that support cholangiocarcinoma research or if you start one on your own Let me know I'd love to participate in anyway I can.

Michelle

Re: Father just passed away

Please see the General Discussion section of these boards.  The family of Mark Clements not only started this website, but they also started a non-profit foundation dedicated to increasing research and awareness of cholangiocarcinoma.  It may appear that there is not much work going on because much of it is behind-the-scenes.  However, it took a great deal of effort just to get the non-profit established, and a large portion of the board is understandably preoccupied at this time with the loss of their son/brother/best friend. 

There is so much to do, and the foundation will need as much help as possible.  I'm fairly certain the foundation plans to have events for raising money, as well as other means of fundraising, and also patient advocacy.  The board is meeting in a few weeks to finish up with the remaining start-up details.  After that, you will undoubtedly begin seeing numerous updates in the General Discussion thread.  Feel free to email me and I will do my best to keep you updated.  sara.hinkley@gmail.com.  It's wonderful to know so many wish to be involved.   We will change the face of this cancer.

30-something caregiver