Patty Maxin’s CholangioConnect Experience

As I reflect upon the inception of CholangioConnect, a myriad of emotions flood my being.  Unequivocally, I recognize that being a part of this vision has been one of the highlights of my life.

I am overwhelmed with gratitude in having had the opportunity to christen a program that has so beautifully supported the cholangiocarcinoma community.

This concept originated in 2015 when a patient and her husband ideated a program that would benefit individuals diagnosed with bile duct cancer. They envisioned a situation where those navigating the course of this rare disease could be a support to each other.

The seeds were officially pIanted in the spring of 2017.  These thoughts began to sprout and a small group of three nurtured ideas and researched philosophies from various volunteer programs. Hours were spent pouring over initiatives from other organizations in order to finesse suggestions and design a plan of action that would be unique to the world of cholangiocarcinoma.  Cholangioconnect had taken root, and it was an honor for me, as a volunteer, to have been asked to be its first program manager.

This sapling slowly began to grow and by July of 2017 it was showcasing precious fruit in the form of treasured relationships.  Six mentors helped eight patients and a sense of “family” was beginning to bloom. There was laughter, knowledge, encouragement and sorrow in this unique togetherness.  The roots of this tree grew deeper with each connection.

It would be an understatement to describe those initial years as a primitive operation, but what we lacked in sophistication, we made up for in heart.

This network of support launched with minimal fanfare, but each month saw a steady increase in requests for volunteer mentors.

At this point in its history, CholangioConnect recruited primarily through a link on the Foundation website or through word of mouth.  Those initial volunteers were a gift - not just to the organization, but to humankind.  They served as an inspiration that showcased a need for hope and guidance, and their ability to help others knew no bounds.   Patients and Caregivers gave selflessly in order to walk alongside others who were in need of a helping hand, an “ear”, or just the confirmation that they were not in this alone.

I often reminisce on those who have touched this program.  The sacrifice of their time so that others might find some comfort on this pathway is heartening!  They are the heroes as their actions remind us that we are all connected…in life and with this disease.  Their examples modeled the ultimate in compassion as they assisted others who were overwhelmed and suffering. They provided a light that allowed others to emerge from the darkness.

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I remember…

…Our first volunteer who traveled from Illinois to Houston quite regularly for her treatments.  She was the sunshine for many as she inspired hope to the patients and caregivers.  This patient had a genuine love for people and exuded a joy even on her most challenging days. Her knowledge and love served as a steady anchor for the Foundation’s new undertaking, helping many navigate this journey.

I remember…

…A beautiful patient mentor from Oklahoma who exuded a positivity in every conversation. In one of our last correspondences, she commented that she had been dealing with so much emotion during the last few months as she could not walk and get around. She wanted to get better so she could help others again.  She wrote, “It is not about me.”

The inspiration that she exemplified will forever fill my heart.

And I remember…

…Our accomplished drummer!  An incredible mentor who brought life and promise to every relationship he pursued.  He was our first in reaching out to the international patients, and he did it with aplomb.  He resided in California, but knew his way around the globe. Even when he was hospitalized, he asked if there was someone he might support. He motivated others to make a difference in this world.

These volunteer mentors have been the catalyst for the success of CholangioConnect.  They are the pillars of this undertaking, and they give/gave so much of themselves.  They want/wanted their every heartbeat to make a difference, and the outreach has been overwhelming. Beautiful stories emerge about mentees who first sought support and now wish to become mentors because of the compassion extended to them. To have had a ringside seat to this dynamic, has been the ultimate gift.

Never did I envision that in less than six years we would be approaching 1000 connections, and with the exception of Antartica, we have a presence on every continent. It is the individuals behind these metrics who make these accomplishments genuinely noteworthy.

This volunteer community carries the lanterns so that others might see to have hope and companionship.  They are the light in our everyday lives.

It is with a humble heart that I move aside to allow new energy to lift this program to what I know will be soaring heights.  The roots have been established and the orchard tended. With this patient and caregiver community, the sky is the limit.

With appreciation…

…I am grateful to the Foundation for entrusting me with CholangioConnect.  It has been my greatest honor to work with an organization where patients are the first priority.

…I am beyond privileged to have been on this journey with Cindy Thomas.  The successes experienced would not have possible without her passionate guidance.  She serves as a beloved counsel and motivator who provides a joy that touches our mentors, mentees and, a most fortunate, me. The harmony was perfect.

And I am truly indebted to the scores of volunteers who allowed me an opportunity to witness humanity at its best.  I was taught so much through their grace and dignity, and I can only hope to give a fraction of what I learned. Facing obstacles of their own, they continue to give selflessly in order to help others in this world of cholangiocarcinoma.  They are the love in this universe.

I will forever be in awe!


-Kahlil Gibran