Hello! I’m new to the Discussion Board Community! My Father has CC

[Kristenhall]

Hello, Cholangiocarcinoma Family!

My name is Kristen Hall, and my father, Fred Weaver, age 70, has CC.  I am new to the discussion boards and am blessed to be able to serve as one of the moderators of this group.  I look forward to getting to know each of you and your story.  We are all so different, yet our stories are all about love and hope.

My CC journey began in June, 2017, when my father began getting ill.  No big deal, just upset stomach, pain in his midsection…after all, he was 67 at the time and could stand to eat a little healthier, as we all could.  As June rolled into July, his annual week long trip to Maine with my mom and their friends ended early with an episode of severe abdominal pain and vomiting.  The ER in Maine was not equipped to do testing so they sent him immediately back home to PA (God bless his best friend for driving him home) and after a week long stay in the hospital — we had a diagnosis…..hilar cholangiocarcinoma.   Our local hospital that prides itself in being “cutting edge” and “a cancer center” gave my dad no hope.  They simply said, this cancer is aggressive and there is noting we can do for you.  They offered him palliative chemo and 11-18 month to live.  Sad and frustrated– my dad was NOT going down without a fight–I began researching cancer centers specializing in this cancer.  With the help of the Cholangiocarcinoma Foundation, we ended our search with the doctors and nurses at Memorial Sloan Kettering Cancer Center in New York City.   In the matter of 2 weeks, our family went from “there’s no nope….no one knows about this cancer…it’s just bad luck” to the CC Foundation saying — “find a second opinion…here’s a list of facilities that can help….here are people willing to point you in a different direction!”  WOW!  What a difference some positivity and support can make in this difficult diagnosis!

Memorial Sloan Kettering saw my dad within 3 days.  They treated him with respect.  They told us….we can’t promise you a cure, but we can promise you we’ll treat you with every club in our bag!  And they did.  This road has not been easy.  We live 4 hours from MSK.  Doctors appointments take days, not hours, because of the drive.  Often, we stay over night.  But my dad is still here fighting.  They used chemotherapy, radiation therapy and a host of testing and imaging to get to the cancer.  My father is currently in a state where there is no evidence of active cancer in his body.  He is blessed.  He is lucky.  But the greatest part of this story is the fact that, in our family, no one fights alone.  And in this community of Cholangiocarcinoma, we are a family.  And in the CC  family, NO ONE FIGHTS ALONE.

If I can be of any small help to anyone on these discussion boards, if I can be a light of hope or positivity, I will be honored to do so.  The Cholangiocarcinoma Foundation has given so much hope and help to me and my family– I would like to pay that forward and help the Foundation reach more and reach further.

Thank you for having me.

All the best–

CURE CC

With love,

Kristen

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