We are Stronger Together

Why?

My wife Sarah was diagnosed with intrahepatic cholangiocarcinoma in January 2015 and passed away nine months later. Reflecting on our experience, I can almost still feel the anxiety, the fear, the sadness, and the confusion – probably the same feelings that all patients and caregivers feel at some point.

There were so few knowledgeable people to consult that it left us feeling both isolated and powerless. Sarah would typically have just enough energy and emotional bandwidth to make it through the day leaving me with the responsibility of scheduling appointments, researching treatment protocols and investigating clinical trials. I was going to do anything to get Sarah better but I too, was left anxious, exhausted, overwhelmed and confused.

Sarah and I needed someone to inspire hope; someone to guide us. Sarah was a newly diagnosed patient and we needed mentorship – failure was not an option. We needed emotional support. We needed someone who knew cholangiocarcinoma. We needed help from someone who had already walked in our shoes – someone to lift the fog that blinded us and allow us to fight with vision, clarity, and hope. We needed someone that allowed us to fall when needed, and who was waiting for us when we got up again.

These are the reasons I started CholangioConnect.

How?

I was aware of other mentoring networks like Imerman Angels – I even signed up to use Imerman Angels. Cholangio is dwarfed in size by the populations of other cancer communities and I felt like we were getting lost in their system.

There had to be a better way. Cholangiocarcinoma patients needed mentors who, they themselves, are cholangio survivors, current patients, caregivers or family members with first hand experience with this unique type of cancer.

The more I reflected on our experience, the more I learned how complicated cholangiocarcinoma is. I was convinced that if we are to affect change we needed to harness the collective knowledge and experiences of our entire community and ease the burden on the same handful of cholangiocarcinoma survivors – the ones typically found by Google searches and sought out by newly diagnosed patients.

Now What?

With the support of the Cholangiocarcinoma Foundation, I created CholangioConnect—a focused mentoring program for patients, caregivers, and mentors with firsthand experience in cholangiocarcinoma. The goal is to connect people with mentors who share their age, gender, location, treatment history, and more, offering personalized support.

Even if a patient loses their battle, CholangioConnect provides support from those who’ve faced similar losses. I believe that while we may lose individuals like Sarah, the fight against cholangiocarcinoma continues. We can turn our grief into hope for others beginning their journey.

You don’t need to be a doctor or scientist to make a difference—just a heart, hope, and the drive to help.

Surviving spouse of Sarah Lynn Macias (passed away 10/12/2015)
Hank Macias (born 11/26/2012)

Patty Maxin – Board Member & Volunteer Program Manager

Andy’s idea found its first champion in Patricia Maxin. Driven by compassion and dedication, she volunteered her time to lay the foundation for a thriving network of emotional support and resources.

Patty became CholangioConnect’s first program manager and transformed Andy’s vision into reality.

To learn more about Patty’s CholangioConnect experience, please click here.