CHOLANGIOCARCINOMA SURVIVOR STORY: A Mother-Daughter Journey of Hope, Faith, and Triumph Part ||||

SECTION 4: THE PATH TO TRANSPLANT

FOR MOM:
When did you find out you were a transplant candidate?

After the final PET scan and biopsy of something that lit up behind my arm on the PET scan (which was negative, but they checked absolutely everything before they gave the green light). Once all those results came back negative, I found out that I would be listed during one of my doctor’s visits.

What was that moment like?

It’s all surreal to me, to be honest. It wasn’t even real when we got the call that my daughter was the candidate to donate. I don’t think it was truly real until the day of surgery. When everyone was surrounding us at the hospital on the day of the transplant, I said to myself, “This is real. My daughter is giving me her liver to save my life.” My daughter and her best friend both got worked up to be living donors, and my daughter ended up being the match. I was nervous about putting their lives in danger to save myself. I asked myself, “Am I being selfish?” But I was reassured by the transplant surgeons—Dr. Barth and Dr. Lamatina—that they would do everything to make sure the person donating would be okay. They go through a very extensive workup to ensure donor safety.

What did you have to do to prepare for transplant?

Lots of lab work, imaging, doctors’ visits, and lots of prayers. To even get listed for transplant they workup every part of your body (colonoscopies, echos, cardiac CTs, MRIs, PET scans, mammogram, you name it they work it up because they want to make sure everything is okay before transplant) I had so much faith in my doctors and knew I was in good hands. Regardless of the outcome, I was ready.

What was the waiting period like?

I was more of a nervous wreck knowing that my daughter or her best friend would be the liver donor. I was more worried about them than myself. I didn’t worry about myself because I had already come to terms with the outcome, regardless of what it was. But my girls—I didn’t want anything to happen to them. I can’t stress enough that I never had a moment when I didn’t trust my doctors and my care team. I knew they had me and them.

What was the hardest part of waiting and preparing?

The uncertainty and the anxiety about my daughter’s safety. Also, just trying to stay healthy enough to make it to transplant while dealing with all the treatments and procedures.

Were there times you weren’t sure you’d make it to transplant?

Definitely, because this cancer is so aggressive. Anything can happen at any moment. But I couldn’t allow that to get me down—there were days and nights, trust me—but I had to keep going. One thing that I noticed through this process of going through transplant: the sun is going to shine whether we want it to or not, and I had to choose my mindset. Most mornings, I would look outside, and the minute I saw the sun shining, I would say, “Okay, I’ve got this.” I will say the rainy days were hard, and so were the early, early mornings. But when the sun came out, everything changed for me.

FOR YOU (CAREGIVER):
What was your role during the preparation and waiting period?

My best friend and I both got worked up to be living liver donors to my mom. It was very nerve-wracking because the testing to get approved for transplant can take weeks. But they have very strict protocols at University of Chicago to ensure the utmost safety of the donors. Luckily, the transplant coordinators, Megan and Katie, did such an amazing job holding our hands through the process.

How did you support your mom while also taking care of yourself?

I think my mom supported us more than we supported her during this time! All kidding aside, we just talked to each other about our fears, but also all the cool things we were going to do together after transplant because it was a second chance at life. We also relied on the transplant team for support. They eased our fears and calmed our minds.

What kept you going during the uncertain times?

Prayer. Everyone’s prayers, my prayers. The idea that there is hope even in the most hopeless moments. I have two beautiful children who kept me pushing forward. Also, having been raised by a mother who I would consider having a stoic mindset: “The sun is going to shine whether I want it to or not. The world is going to continue whether I want it to or not, so I have a choice to turn this pain into purpose for myself and for others. I will not crumble.”

How did you handle the waiting?

Through faith in God that no matter the outcome, we were going to be okay. We have a huge network of support. Our friends and family are a very tight-knit group. They really showed up for us in ways we’ll never forget.

SECTION 5: THE HARD MOMENTS

FOR MOM:
What was your scariest day or moment?

The day I was diagnosed and heard the word “cancer” was terrifying. Also, the times I was hospitalized with infections, especially when I had sepsis. Those moments made me realize how fragile life is and how quickly things can change.

Was there a moment you felt like giving up? What changed?

There were definitely moments when I felt overwhelmed and exhausted—physically, mentally, and emotionally. But I never truly wanted to give up because I had too much to live for. My grandchildren, my children, my husband—they were my reason to keep fighting. And my faith kept reminding me that there was purpose in this struggle.

Were there setbacks or complications?

Yes, I had multiple infections from the biliary drains, including one episode of sepsis that required hospitalization. My blood counts would drop during chemo, which meant pausing treatment. Each setback felt like a step backward, but my team always got me back on track.

How did you cope with fear and uncertainty?

Prayer was huge for me. My prayer cards never left my side. I also tried to focus on small victories and the things I was grateful for each day. And honestly, humor helped too—naming my drains Gucci and Prada made something awful feel a little more bearable.

What did you do on the really bad days?

On the really bad days, I would put on my lipstick, even if I wasn’t going anywhere. It was my way of holding onto myself. I would also look for the sun—literally. Seeing sunshine reminded me that a new day had come and I could get through it.

FOR YOU (CAREGIVER):
What was the hardest day for you?

So, so many hard days. The initial months after the diagnosis—the idea of losing my mom was unbearable. I felt like I was in a nightmare. I witnessed a lot of death and dying during my years of nursing, so I thought I was prepared, but nothing prepares you for when it’s your own loved one. All the days she had to go in for scans. Scanxiety is crippling. Not knowing what those scans will show. Bracing yourself for how you would handle the news if the cancer had spread.

How did you handle your own fear while staying strong for your mom?

I tried to stay grounded as much as possible, not sit too much in the pain but try to find meaning and purpose in it. I also tried to get back to normal life as much as I could. I am a health coach, and so I know how important it is to take care of yourself even in the face of trauma. Eat well, stay close to God, move your body, listen to uplifting things, lean on friends. Surround yourself with good people who will nurture your soul.

Were there moments you felt overwhelmed or hopeless?

Absolutely, but I tried to remain hopeful. I was more overwhelmed by seeing my mom not be able to take a break between doctor’s visits, chemo, lab draws, procedures, and imaging. It was very hard to watch her go through all of that without respite.

What did you sacrifice or put on hold during this time?

This is such a great question. Cancer changes you as a person even if you’re not the one with the diagnosis. I am not the same person I was on October 27, 2024, when Mom was rushed to the hospital. While I tried to maintain my life as it was, I did have to take a step back from things because I could only be in so many places at once. I had to take a step away from nursing and invest less energy into my coaching company, Dynami Health and Wellness. I was able to focus my time and attention on my children and getting my mom to transplant. And I was blessed to be able to be a living liver donor to my mom. My life has so much more meaning because of this. And while I couldn’t always see it in the moment, this experience is turning me into the person I have always wanted to be.

SECTION 6: SOURCES OF STRENGTH & TURNING POINTS

FOR MOM:

What kept you fighting on the hardest days?

My family. My grandchildren. The thought of missing their milestones was unbearable. Also, my faith—knowing that God had a plan, even if I couldn’t see it. And honestly, the incredible care team who believed in me even when I struggled to believe in myself.

Who or what gave you strength?

My daughter’s unwavering support, my husband’s presence, my faith, and the entire medical team. Also, the people who were praying for me—I felt those prayers every single day.

Were there moments of unexpected joy or humor?

Yes! Naming my drains Gucci, Prada, and Louis V made people laugh and made me feel like I still had some control over the situation. Also, getting to go to Hobby Lobby after the drains were removed and feeling that sense of freedom was pure joy.

What surprised you most about this journey?

How strong I actually am. I never knew I could endure what I went through. Also, how much love and support surrounded me—from family, friends, and even strangers who were praying for me.

Did your perspective on life change?

Completely. I don’t take anything for granted now. The small things—like picking out pumpkins or watching the leaves change—mean so much more. Life is precious, and I’m determined not to waste a single moment.

FOR YOU (CAREGIVER):
What kept you going?

I wanted my mom to live, and so long as she had a chance, I wasn’t going to stop fighting with and for her. She has been there for me through every single battle, and no matter what, I would be there for her through all of it.

How did this experience change your relationship with your mom?

It’s made us realize what really matters. It has simplified our lives to focus on what is essential. We are both the type of women who want to make an impact on other people’s lives. Because we have both been through a lot, it is our mission to turn pain into purpose.

Were there silver linings or unexpected gifts in this journey?

Never take hope away from someone. Ever. To never take this beautiful, precious life for granted. The gift of being able to give my mom a piece of my liver and watch her thrive—that’s something I’ll treasure forever.

What surprised you most?

What a warrior my mom is. Her body endured so, so much, and through all of it, she still showed up for life. She still wanted to be there for us. It was a true testament of what the word love really means.

FOR BOTH:
Were there turning points—moments where things shifted?

MOM: Getting the call that I was approved for transplant felt like a huge turning point. Also, having those drains removed—I finally felt like myself again.

DAUGHTER: The day we found out my mom was a transplant candidate. And then the day I found out I was a match to be her donor. Those were the moments hope became tangible.

What role did faith, hope, or community play?

MOM: Faith was everything. I don’t know how I would have gotten through this without it. And the community—our church, our friends, our family—they carried us when we couldn’t
carry ourselves.

DAUGHTER: Hope was what kept us going. Even on the darkest days, we held onto hope. And our community showed up in ways that still bring me to tears. We were never alone.

Did you find support through the Cholangiocarcinoma Foundation or other organizations?

DAUGHTER: We learned about the Cholangiocarcinoma Foundation during Mom’s journey, and it was helpful to know there was an organization dedicated to this rare cancer. We hope that by sharing our story, we can give hope to other families facing this diagnosis.

Alexandra Feliciano – Cholangiocarcinoma Survivor & Liver Transplant Recipient & Chrissy Putnam – Living Liver Donor & Caregiver.