Update & World Cholangiocarcinoma Day!

LinkedIn Family - I come to you today asking for your support on World Cholangiocarcinoma Day, a recognition holiday for those afflicted with or are supporting those with Bile Duct Cancer. Not even ONE YEAR AGO, I had no idea this even existed. Within that last year, I was diagnosed with Primary Sclerosing Cholangitis (PSC), an autoimmune disease that inflames and scars the bile ducts and increases the likelihood of Cholangiocarcinoma (Bile Duct Cancer) by 398 fold!!! Unfortunately, in June of '24, following a routine maintenance procedure relating to my PSC diagnosis, my medical team discovered CANCER had formed in my bile ducts, just 3 months after any indication anything was wrong. This was a heartbreaking diagnosis and one that because of the rarity & aggressiveness of this cancer required quick, intense and life-changing treatment to hold off the cancer growth.

?Cholangiocarcinoma is an EXTREMELY RARE CANCER in which only ~8,000 cases are diagnosed in the US each year. Out of those diagnosed, ~60-80% of those cases are diagnosed in stage 3/4, where (to-date) there is no known "cure" for this cancer. Chemotherapy/Radiation/Immunotherapy/Surgical Resection/Palliative Care can only hold-off the spread of this particular cancer, but cannot provide a cure. The ONLY known CURE for this devastating disease is Liver/Bile Duct Transplant. Only 100-200 people in the US per year qualify for this treatment and it's those that miraculously uncovered this cancer in the early stages that have this chance. I am one of the lucky few.

?On January 24th, 2025, after nearly 8 months of Chemotherapy, Radiation, Palliative Care procedures, 10's of thousands of miles of travel to/from the University of Chicago and Mayo Clinic Jacksonville for treatment and evaluation, and after countless road blocks (medical/insurance/logistics), I was OFFICIALLY APPROVED & LISTED for Transplant at Mayo Clinic in Jacksonville, FL. This required a move from our home in Holland, MI to Ponte Vedra, FL, in order to be close when the call comes in for my donor liver/bile ducts. This is truly the greatest moment of my life (kind of weird, right?). To go from data points telling me I have a 0-2% chance of survival 2 years out from diagnosis to the a chance at a CURE, is truly a MICACLE.

?I now sit in waiting for "The Call" to come in and my life to be forever changed (once again). After what is expected to be a 6-8 hour surgery, I will wake up CANCER FREE!!! Albeit, with a 12-16" zipper across my abdomen, but that's a tiny price to pay for a second chance at life.

?While I wait for the call to come in, I am asking my LinkedIn Family to rally together to bring awareness not only to my Journey, but also to the many suffering from this devastating disease worldwide (patients & caretakers). This VERY understudied cancer deserves more/better options for the collective and not just for those in early stage. Bringing awareness and openly talking about this terrible disease is a great start! The more people that know this cancer exists and the more we talk about how limited the options are for patients, perhaps the more focus we will be get on finding CURES FOR ALL!!!

?Today, I encourage you to THINK GREEN and I encourage you to share this message, share anything you have learned with those around you, ask questions to become better informed (I am here to answer what I can) and perhaps most importantly GIVE A HUG TO THOSE AROUND YOU! Appreciate those around you, appreciate the often un-thought-of things in your life and the life you get to live every day. They are all blessings.

?I have been documenting “The Journey” over the past 8 months on my IG and YouTube pages and I encourage you to explore the content, Like/Follow my pages and come along for the ride. I share A LOT of VERY REAL, authentic content as to inform and motivate others that may be afflicted with Cholangiocarcinoma or any other Cancer. If I can help one person (hopefully many more) by sharing my Journey, it’s all worth it!? Please join along, it’s going to continue to be quite a ride.

?And for those with the means/ability, I will humbly ask each and every one of my colleagues, business partners, friends and acquaintances to think about donating to my family’s GoFundMe (search Petterson Cholangiocarcinoma). We are only 53% the way to our goal and without myself having the ability to work, the medical bills/expenses are piling up, new deductibles are coming in to start 2025 and with a nearly $1,000,000 surgery/recovery impending (much of it covered by insurance), we could certainly use your gracious support. Any and all donations mean we can help stabilize our life and provide consistency for our children during this inconsistent time. My family thanks you in advance for your support!!!

?IG: @TheJourney_hCCA

YouTube: @TheJourney_hCCA

#CholangiocarcinomaAwareness #WorldCCADay #CholangiocarcinomaFoundation #GreenForCCA #CureCCA #Cholangiocarcinoma #BileDuctCancer #Transplant #Cancer #Survivor #Caretaker #Positivity #CantStopWontStop