A Sister’s Mission: Advocating for Rare Cancer Research.

Feb 16, 2016 | Patient Stories

The following guest post was written by TargetCancer Foundation advocate Lisbeth Garassino. Lis’ mother, Doreen Darsh, has also written about her experience- you can read her story here.

Three years after my brother, Joe, passed away from Stage 4 intrahepatic cholangiocarcinoma, I went to the third annual Cholangiocarcinoma Foundation Conference in Salt Lake City. I attended as an advocate for TargetCancer Foundation, a rare cancer research organization out of Boston.

I found it: Intense. Heavy. Depressing. Hopeful.

Before last week, I hadn’t met anyone else with cholangiocarcinoma. I didn’t know there were so many people my age, 33, still getting sick. At the conference, there were thirty patients mostly in their thirties, forties, and fifties. One woman in her sixties said she didn’t expect to be the oldest person attending with the disease.

Surgeons and oncologists from around the world showed different cholangiocarcinoma presentations. Advances have been made over the three years since Joe died. They now know the importance of understanding the patient’s genomic breakdown. They also know now that the cholangiocarcinoma we have in the U.S. is different than that disease which is caused by liver flukes in Thailand. The scientific data is coming.


Flying into Salt Lake City.

When I look back on Joe’s illness, I realize how brief it was—only seven months after a random stomachache when he was just 28. I was with him throughout his journey, having quit my job to be with him. I tried to imagine how it would have been to have him sitting at the conference—eager, trying his hardest to understand what he was fighting.

The patients sat diligently at tables in the back of the room as the medical community recited the sobering statistics. With them were forty caregivers and a medical community of scientists, oncologists, surgeons, nurses and interested parties from around the world. I sat between a doctor from Miami and a doctorate fellow from India and patients from around the U.S.

I saw in the caregivers’ eyes the same sadness as I felt as we watched the lectures. I saw the hope in patients’ perspectives where treatment worked, the overwhelming desire to figure things out.

The doctors were volunteering their time, trying to advance the science. But why didn’t the trials do better? Why can’t we figure out our cells in our body better so we don’t have to suffer such pain? And it is a very painful cancer.

I know the statistics from this disease. I also know how to live with a hole in my heart. I understand something that not a lot of people understand or even want to touch. Death, cancer – these topics freak out most people in our Western society. This community Stacie Lindsey and the Cholangiocarcinoma Foundation brought together is special — they made me feel comfortable. They reminded me of Joe. Brave souls.


Lisbeth at the conference.

Thanks to TargetCancer Foundation Executive Director Jim Palma for bringing me to the cause in a meaningful way and for all that this amazing organization does. Thanks to Nabeel Bardeesy and his team for working to find a treatment that works, specific to cholangiocarcinoma. Thanks to the medical field for working so hard to advance the research. Thank you to Stacie and her team for bringing it all together in a space where there was almost nothing. Thank you to the caregivers for bearing witness to these remarkable peoples’ journeys and helping them to not feel alone. Thank you to the beautiful souls with this horrible disease for being brave and showing up to such an important event. Listening to the sobering facts and giving it all they’ve got — just like Joe would have.

In addition to being an advocate for TargetCancer Foundation, Lisbeth Garassino is the lyricist for Hush, Baby by Olya. Proceeds from the song benefit cancer research. She also started Joe’s Sister, an open group to help siblings and friends who have experienced loss.