Help Fight Cholangiocarcinoma in Memory of Mom

My mom went to Northwestern Medicine (McHenry) on March 31st, 2024 due to experiencing extreme weakness and a lack of appetite. In the ER, they did an abdominal CT scan where they found a liver mass measuring approximately 10x9cm. They also found that my mom’s kidneys were not functioning properly due to elevated creatinine levels. After these findings, she was admitted into the hospital where she stayed for the next two weeks. During her stay, they biopsied the liver and input a drain to clear her infection.

We found out on April, 4th that mom had squamous cell carcinoma (SCC) of the liver, a diagnosis the oncologists said was extremely rare and unlikely. After two months of back and forth from those same oncologists at Northwestern, them continuously telling us that they needed to track down the primary source of cancer before starting treatment (because it couldn’t possibly be the rare cancer they originally told us it was), endless testing and multiple trips to the ER due to her need for blood transfusions, we decided to switch her treatment to Good Shepherd (Barrington). Based on all of the extensive testing NWM put her through previously, the doctors there immediately diagnosed her with SCC cholangiocarcinoma (bile duct cancer), with metastasis to the liver and femur. They also definitively (& finally) told us that it was stage 4 cancer and terminal, with a very poor prognosis. They had a plan to start palliative treatment within the next week due to the amount of pain my mom was experiencing. This would be a short course of radiation over a two week period.

This obviously took a turn due to my mom’s increased weakness and inability to travel to and from doctor appointments without falling. Because of this risk, she was placed at Wauconda Care in hopes that rehabilitation would help build her strength. They discharged her after a short two weeks, stating that she was doing most everything independently, though this was vastly different from what we as a family saw (we did appeal their decision to discharge, though this was rejected due to their staff reports to insurance). And sure enough, within two days of being home, she was transported via ambulance back to Good Shepherd ER due to falling and hitting her head while trying to leave her home for her first radiology appointment.

While there, they found a plethora of other issues along with further metastasis to her spine and ribcage, and significant growth of her liver mass. On her second day there, mom started showing more severe cognitive issues; staring off into space, slurring words, speaking “gibberish”, not remembering basic information, etc. Due to this, they did a brain MRI while in the hospital to see if metastasis to the brain was occurring. They did find a new lesion lining the area between her brain and skull, which they told us was indicative of cancer cells infiltrating the brain. At this time we decided to change the palliative treatment plan to one longer radiation session to both the femur and liver before entering hospice through JourneyCare and bringing her home to rest.

On Friday, June 28th, she came home, where she wanted to be. Many family members came to visit with her that weekend, sharing stories, bringing meals and helping with her care. We played 80s music, danced, laughed and cried. She was her sassy and funny self until she no longer could be. Mom passed on July 2nd at 3:55 pm, with me and my grandma by her side. She was very much at peace.

It was a difficult 3 month journey that went by way too quickly. We hope that your donation to The Cholangiocarcinoma Foundation will help researchers find new and better ways to treat this rare form of bile duct cancer, to extend the lives of those affected while maintaining the quality of their time left, and spread awareness to not only the public, but to oncologists who aren’t as familiar with treating this type of cancer. To put it in perspective, only 12 other cases of this specific cholangiocarcinoma have been reported since the 1930’s, so information right now is extremely limited.

Please take care of yourselves, both mentally and physically. Advocate for yourself and your loved ones, and hold doctors accountable. Our healthcare system doesn’t care enough, so it is our job to do so.