Survivor Thrives with the Support of Family and Community

In September 2023, Aileen’s life took an unexpected turn when she was diagnosed with cholangiocarcinoma. As a pediatric nurse and case manager for AmeriHealth, she was no stranger to the medical world. Still, nothing could have prepared her for the physical and emotional toll this diagnosis would bring.

Following her diagnosis, Aileen underwent a Whipple procedure, a complex surgery that involves removing parts of the pancreas, small intestine, and bile duct. Her recovery was long and difficult, filled with emotional ups and downs and a challenging stay in the ICU. But Aileen’s resilience shone through, even when she faced complications after starting oral chemotherapy, which led her to transition to a chemo port and begin a regimen of gemcitabine and cisplatin. Remarkably, she handled the treatment well, impressing even her doctors, who credited her positive attitude as a crucial factor in her strength throughout chemotherapy.

Then, in May 2024, came the news she had been fighting for—Aileen was declared No Evidence of Disease (NED).

The Role of Family: A Pillar of Strength

Aileen’s diagnosis story is intertwined with the support of her family. Her two sons were pivotal in her journey, especially during the most critical moments. One son, determined to find the best possible care for his mother, worked late into the night, reaching out directly to specialists. His emotional plea led to a response at 6 a.m. on the weekend. Thanks to his efforts, Aileen’s case was discussed among professionals at a conference, which ultimately led to a treatment plan that helped save her life.

“My son was so grateful to make a connection with someone who could help his mom,” said Aileen. “If my two sons hadn’t worked so well together and gathered all the documents the physicians needed—on a weekend, no less—I don’t believe my outcome would have been as favorable.”

Her husband, too, was a rock throughout her journey. He meticulously kept track of her medications, managed her wound care and drain maintenance, and even administered her IV antibiotics through a PICC line at home. “My husband was the foundation I needed,” Aileen shared. “He was my support in every way.”

A Community of Support: The Cholangiocarcinoma Foundation

Alongside her family, Aileen found solace and encouragement from the Cholangiocarcinoma Foundation (CCF). She first encountered the Foundation during her initial appointment, receiving a folder that provided hope in the days that followed.

“That evening, I searched for the folder, which made me feel ‘not so alone,’” Aileen recalled. “I signed up for the welcome package, and I loved the nutrition book and water bottle the most.”

Feeling both mentally and physically ready to give back, Aileen is now eager to become a mentor, paying forward the support she received. “Without my support system, I couldn’t have done this,” she said. “I want to make sure no one has to go through this alone, and I want to be their cheerleader.”

A Message of Hope for Others

As Aileen reflects on her journey, she has a message of encouragement for others navigating their own cholangiocarcinoma diagnosis: “No matter the outcome, what’s most important is who you have fighting with you.”

Through resilience, love, and the power of community, Aileen’s story reminds us that we are never alone, even in the face of life’s most difficult challenges.