A message from Andy’s wife of 12 years, Joanne Petterson:
On June 12, 2024, our lives changed instantly and forever when we learned Andy was diagnosed with an extremely rare and aggressive form of Cancer called Hilar Cholangiocarcinoma (hCCA), commonly referred to as Bile Duct Cancer. This form of cancer is devastating on its own, but in Andy's case, it was a result of a pre-existing autoimmune condition called Primary Sclerosing Cholangitis (PSC), diagnosed just a few months earlier in March. PSC inflames and scars the bile ducts, increasing the risk of bile duct cancer (398 fold), which ultimately led to Andy's diagnosis. As you can imagine, we were shocked, devastated, scared, and angry as this was not part of “our plan”. It never is.
When Andy shared the news with me that night, the protector in him came out. As he explained what he had learned in the few hours before telling me, he told me, “do not Google and do not believe the headline stats”. Unfortunately, he had already learned “too much” and wanted to spare me from the heartache that unfortunately overcame me and our family in the coming days.
Cholangiocarcinoma diagnoses are VERY RARE (roughly 1:100,000) and most of the time, it isn’t caught before it’s too late to create a plan that can have a meaningful impact on the patient. The total 5 year survivability rate for this cancer hovers between 0-2% and that information was exactly what Andy was trying to shelter me from learning on night one. Living with this stat for more than 3 weeks as further testing took place, had us constantly on edge, but also cherishing every moment we could, as we just didn’t know what was next.
Fast forward to early/mid-July, and through the grace of God, the ongoing testing revealed that the cancer was localized and non-metastatic, our first win! While this was a massive win for us, the good news that came with that was quickly replaced with angst. The treatment plan that three separate medical institutions all unanimously agreed on was Radiation with concurrent Chemotherapy followed by..…Liver Transplant. This is Andy’s chance at a CURE and to beat the odds that we have been staring in the face all summer long. For reference, only about 100-200 people a year with Cholangiocarcinoma (specifically hCCA) have the opportunity to receive a liver as a curative therapy. Andy is one of the lucky ones to get this chance.
Andy began his treatment journey on August 12th and has been commuting 300+ miles daily to the University of Chicago from our current home in Holland, MI. While there, they administer daily External Beam Radiation and Chemotherapy, which will last 5 weeks in total. Upon completion, he will undergo various repeat procedures/tests to restage him to ensure that the cancer has not grown (hopefully shrunk). Unfortunately, this particular cancer does not respond well to Chemo/Radiation from a curative perspective, but it can slow progression and buy time for those in Andy’s position. Why this is an important fact is if the tumor progresses beyond 3cm, he would no longer be eligible for the transplant. Because of this, Andy will remain on low-dose Chemo until the time of transplantation. With that said, we know that “God’s Got Us” and through Him, we know our prayers will be answered.
Unfortunately, the financial burden that this diagnosis and treatment have placed on our family has begun to put a tremendous strain on our day-to-day life. While our insurance covers much of the true medical expenses, there are still massive related expenses that are piling up from all the co-pays, deductibles, non-covered therapies, travel and lodging expenses and life-long medications he will need. Additionally, Andy has been unable to work in any significant capacity and likely won’t be able to until at least 6 months post-transplant (minimum). This has left me as our sole provider and this is why we come to our closest family, friends, colleagues, teammates and those who just want to help, kindly asking for any support you may be able to offer. Your donation would truly be a blessing to our family as we work to navigate this devastating situation. We have two young daughters, ages 7 and 4, and are trying to keep their lives as normal as possible throughout this process. We thank you from the bottom of our hearts for your support and generosity.
To leave things on a positive note, we have spoken to a few survivors who are post-transplant and thriving in their lives (cancer-free). They give us so much hope, but we know we have a long journey to get to the other side.
Andy has created a YouTube channel and Instagram account detailing his journey and hopes that you will Subscribe/Follow. He will share regular updates to these pages to ensure that all of those on "Team Andy" are well informed as to his progress.
Find them here:
YouTube: @TheJourney_hCCA
Instagram: @TheJourney_hCCA