(ABC4 NEWS – Salt Lake City, UT) Sometimes things happen serendipitously. This Utah Caring Story is an example. I had wrapped up my day interviewing several people at the Silicon Slopes conference at the Salt Palace.
As I was walking through the building, I noticed a lot of people wearing green. It wasn’t St. Patrick’s Day and so my interest was piqued. I followed the people and discovered that they were there to attend a medical conference.
Why the green. Come to find out is the awareness color of a rare disease called Cholangiocarcinoma.
A couple of days later, three women, all dressed in green, join me at the ABC4 News studios for an interview.
One of the first thing I ask is what is “cholangiocarcinoma” and how do you pronounce it. Melinda Bachini explained; “Cholangiocarcinoma is a bile duct cancer. Your liver gets rid of toxins. there is a blockage in the bile duct you become jaundice. You get yellow. Your eyes get yellow and your liver can start to fail.”
Imagine getting a rare cancer. You would probably want all the information and connections you could find. Mark Clément’s family did just that. The Cholangiocarcinoma Foundation was founded by Mark’s sister, Stacie Lindsey. She told me about the conversation with her brother as they were setting up the foundation; “I turned to Mark and said do you want to name it after you? He said, no, I’m going to die. This is for the patients that will come after me. So, we have to name it something, so they can find it. Even though the name is long and difficult. That’s what this cancer is called. “
Kristen Burns was diagnosed on a Monday. Her family started researching and found out about The Cholangiocarcinoma Foundation’s annual conference starting the next day. It just so happens to be in the same city she had recently moved to…Salt Lake City.
I asked Kristen what it meant to attend the conference; “Honestly, I think it’s going to save my life. to go to the conference and meet people who were diagnosed in 2005, 2006 just blew me away. I didn’t think that was possible after some of the stuff I had read online.”
One of the speakers at that conference, Melinda Bachini, was diagnosed 9 years ago. She has been blessed to be in a variety of clinical studies that have opened the way to other targeted treatments. She said with a smile; “My last dose of Premolazatab was 2 years ago and I’ve had no other treatment since then and those spots haven’t moved so things are good. If they are not growing I feel I could live with this forever.”
What gives Kristen hope? She said; “I want to travel and live life to the fullest. I’ve got more trips. I have an adorable 3-year-old niece that make me laugh.”
When I asked Melinda, what keeps her going. She shows me her phone with a picture of a 2-month-old day and says enthusiastically; “My Grandson, Sawyer.”
These stories deserve to be told. These are Utah Caring Stories. I’m Doug Jessop, ABC4 News.