Hope and Gratitude, One Step at a Time

by Heather Black, with contributions from Joan and Johanna

Memorial Day 2024 in Boulder, Colorado, was a perfect day of summer promise, with a bright blue sky and white puffy clouds. I sat on the grass by the side of the road watching the BOLDERBoulder 10K (BB10K) with my parents, Joan and Dana, my brother Eric, and his young sons Sebastian and Miles.

My sister, Johanna, runs in the BB10K every year. After our mom’s diagnosis of hilar cholangiocarcinoma, Johanna decided to dedicate her 2024 run to our mom in the form of a Team CCF fundraiser for the Cholangiocarcinoma Foundation (CCF) as a way to “do something” to help despite living roughly 2,000 miles away and 5,000 feet above sea level from Boston, Massachusetts.

This year’s run became a means to raise awareness about cholangiocarcinoma and the invaluable work of CCF. It also became an avenue to share with others our mom’s recent cancer diagnosis and the impact it has had on our family, and it provided a way for others to help.

The BB10K was as much a celebration as a road race, with walkers, runners, joggers, and spectators of all ages, abilities, and walks of life laughing, shouting, and cheering. I pointed out the different runner’s costumes to my nephew: banana costumes, a Gumby outfit, people wearing flamingo pool floaties, Buzz Lightyear, a sea of colorful tutus, and more. While it was fun, all eyes were on the runners still coming, searching for the bright green CCF shirts worn by Johanna, her husband, Dave, and my nephews’ mommy, Nichole. We all wore white trucker hats with the words “Team Noanie” embroidered in lilac, the color of hope.

Mom’s diagnosis began when a mass was revealed by a CT scan on February 14, 2024, Valentine’s Day. In our mom’s words, a day meant to celebrate love began a rollercoaster of fear and uncertainty with tests and consultations that finally resulted in the diagnosis of hilar cholangiocarcinoma and treatment at Massachusetts General Hospital (MGH) with Dr. Haley Ellis. It was a mix of emotions for us all. For me, this was compounded by having to share the news with my daughters, Lila and Nora, who are very close to their Noanie, and figuring out how to be a mom to hurting daughters and a daughter to a hurting mom.

We quickly discovered that we would be fully supported on this journey. From the first meetings with Dr. Ellis and throughout the long days in the infusion clinic, our entire family has been surrounded by understanding from doctors, nurses, social workers, and psychiatrists (especially one who specializes in children, who helped me tremendously), and CCF, which has been there for us from the beginning. During our first visit with Dr. Ellis, she handed us a folder from CCF filled with resources, information, programs, and more. With that folder in her hand and her family, friends, and medical team by her side, it was clear to my mom: “I am not alone.”

If I had a choice, it would be that my mom would never have cholangiocarcinoma. Also, this experience has given me time with her that I treasure. Of my parents’ four children, I am the oldest, and the only one living locally, and my work has flexibility. This has allowed me to accompany her to infusions and many of her procedures. While infusion days are long and take their toll, they are also an incredibly special and intimate time for us. I cherish and am grateful for the joy we find in this time together and the conversations that flow along with the hours. During this journey, we have learned to hold on to small moments and to make decisions and plans with intention.

It is central to my mom’s treatment that she continues doing things she loves, adapting as needed to her “new normal.” In this spirit, one decision, supported by Dr. Ellis, was for my parents to keep a planned trip to Colorado to visit my sisters, Johanna and Emily, along with my brother Eric and his family from California, to celebrate three family birthdays, including my mom’s. Soon after this decision, the idea of us all being together for the weekend took hold and I joined the trip with my husband Mark and daughters joining in spirit.

The BB10K became central to the gathering. Johanna’s CCF fundraiser created a way for our family to integrate and process this life-changing diagnosis through the photos, reflections, and feelings we collected and shared to tell our mom’s story for the fundraiser website. The trip and the fundraiser became not only an opportunity for time together, one that I seized with gratitude, but also an opportunity to embody hope and, for those across our family’s extended community, to express their love. I am so grateful to CCF for making that possible.

The community response to the CCF fundraiser was heartfelt with messages of love and generous contributions that enabled us to raise our goal multiple times. As of July 7, 2024, we have raised $5,779.69, and my mom has been overwhelmed by the response. “Donations, words of support and encouragement, and many expressions of kindness reached across the many miles and years of my life,” she said. “This fundraiser has created bridges of connection and communication beyond imagination.”

In our mom’s words, “This is where the power of love grew beyond my imagination with new meanings of hope. Hope is that ‘feathered thing’ fueled by the gifts of kindness, generosity, and a touch of magic. Hope is also funded by research, support, and awareness. I received the gifts of hope for my birthday this year and am forever grateful.”

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