Written by Stephanie Zinis
In May of 2018 our families’ lives were forever changed. A routine doctor visit led to an accidental discovery that my mom, Renee, had cholangiocarcinoma, a rare cancer affecting fewer than 40,000 per year.
After my mom’s diagnosis we began researching and preparing for the future ahead. We came across many helpful cholangiocarcinoma support groups which lead us to the Cholangiocarcinoma Foundation webpage. Through both of those resources we gained so much support and knowledge. We learned the importance of genomic testing and pushed the doctors to check my mom’s tumors for mutations when chemo didn't work.
It turned out my mom has FGFR2 fusion, a targetable mutation that opened the door to clinical trials and other options. Over the past year and a half my mom has gone through a liver resection, 3 different chemo drugs, radiation and 2 trial drugs. Despite the circumstances my mom maintains a positive and determined attitude.
The day of the walk we wore our green ribbons and wristbands to raise awareness to cholangiocarcinoma. We walked in honor of my mom and all the warriors facing any cancer.
Since that walk we have also raised funds for the Cholangiocarcinoma Foundation in hopes that we can raise more funds for research on this rare cancer. If we all contribute in little ways together we can make a difference.
The picture above is about 3 months after my mom’s liver resection. This is a picture of my mom, and our family and friends coming together to raise funds for Gilda's Club. Gilda's Club is an amazing organization offering support to people with cancer and their families, free of charge so "no one faces cancer alone."
This my mom, Renee Nagle, wearing green for CC awareness.
My mom, Renee, and her Oncologist, Dr. Margolis. We have been blessed to have him as my mom’s Oncologist. He remains optimistic and never gives up. I believe the right doctor makes a world of difference!
(click on pictures to enlarge)