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Experiences

My Hero’s Journey: A Story of Love, Loss and Art

My Hero's Journey A Story of Love Loss and Art Feature Image

Editor's Note: The following post comes from Abby Jeske, a Lilly employee in early phase oncology research. In this, her second blog article, she continues to share her personal story about the impact of clinical trials on her life and how participating in the Hero’s Journey™ Art project allowed her to not only honor her grandfather’s participation in a trial, but also make one last memory with him.

Abby-Margaret-Jeske

A few weeks ago I had the opportunity to spend my lunch hour painting a brick for the Hero’s Journey™ Art project as a part of a team-building event with my Early Phase Oncology Indianapolis teammates. Hero’s Journey™ Art is a Lilly-sponsored initiative that honors the stories and experiences of all people affected by clinical trials—from patients, caregivers and families to industry and health care professionals. My experience during the workshop was deeply cathartic and personal for many reasons. As I shared in a Lilly Trials blog post last March, my maternal grandfather, Papa, was involved in an oncology clinical trial for his leukemia when I was in high school. The impact of that experience is what helped drive me to my chosen vocation and current role at Lilly.

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Since my first post, Papa’s journey arrived at a pivotal crossroad. In September 2016, Papa suffered back-to-back infections that culminated in him acquiring clostridium difficile (C. diff). Since Papa had been on some sort of immunosuppressant agent for the past 17 years, this wasn’t the first time he had suffered from C. diff and so our family approached the diagnosis as we had every other health setback he had encountered, with an optimistic outlook that he would recover and a plan for his rehab and support. Unfortunately, on November 2, 2016, during a care-call with his doctors, the decision was made to discontinue further treatment for Papa’s infection, as he was not responding to therapy and was beginning to develop additional complications.

Papa’s brick gave us an opportunity to share one more experience together.

As I made plans for a potential final trip home in early November, the opportunity presented itself for Papa to paint a Hero’s Journey™ Art brick. As Papa and I talked through what message he wanted to convey with his brick, we found ourselves going down a path of reflection in which we were able to work through many of the emotions we were feeling about where his journey had led us. We reminisced about the fact that we had ultimately received 15 additional years of milestones celebrated, holidays together, pizzas enjoyed (Papa’s favorite food), golf tournaments and, most importantly, laughs. It was this realization that allowed us the closure to gracefully accept the inevitable and enjoy the time we had left. Papa’s brick gave us an opportunity to share one more experience together.

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Sadly, my hero completed his journey on December 9, 2016—seventeen years to the day from when he was diagnosed with leukemia. I would be lying if I said that the thought of painting a brick of my own during my team workshop wasn’t a bit overwhelming and even intimidating for me, but it also offered another step in the healing process. Creating my own brick allowed me the chance to show the world what clinical trials have given me and what I hope they will continue to give to other families: time. Many people I have talked to about Hero’s Journey™ Art say they haven’t decorated their brick yet because they can’t think of what they want to say or depict. They worry that their message won’t be impactful. My advice to them is to follow their heart and paint the first thing that comes to mind, and to embrace the opportunity that’s been offered to honor clinical trial participants around the world.

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Whether you are completing a brick or just following the progress of this project, it is likely you know someone who’s been affected by clinical trials. Clinical trial heroes are all around us, whether it’s the patient that just achieved a response in a trial you’re managing, your friend or family member who uses an approved medication (thanks to clinical trials) or your coworker’s loved one who has lived the clinical trial experience. Honor them and their stories by participating in the online conversation through #HerosJourneyArt and you may be surprised by what you gain from the experience.

Blog post originally appeared on LillyPad.

Tags: Art, Patient Stories,

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