We've created this page in memory of our beloved wife, grandmother, sister, aunt, and friend, Ellen Sullivan Kopp. I have added below a note written by Peggy, Ellen's sister, that details far better than I can her long struggle with this disease. I wish only to add that perhaps what was most remarkable in Ellen was how often and how easily she brought people together;  she was the thread that knit us. If you are able to honor her memory with a donation to the Leiomyosarcoma Research Foundation, our family would be grateful.

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Ellen Sullivan Kopp was diagnosed in November of 2016. She endured 11 surgeries, 7 different chemotherapy regimens, and repeated radiation   treatments to her brain, leg, spine and abdomen.  

 

I has the privilege together with her husband of walking beside her every step of her 6 year journey with cancer. The road was long and my sister was tired. We all were. 

 

But, she had an indomitable will to live. She hated the “fighting”cancer metaphor. “There are winners and losers in fights, and nobody wins with this awful diagnosis, and I sure as hell didn’t lose, because there were no other treatments available to me.” 

 

She also hated the “she failed treatment” terminology. The treatment failed her, not the other way around! Get it straight, cancer! 

 

My sister spent her career in clinical research management.  She was diagnosed with Leio (primary site in her right leg) while she was managing a soft tissue tumor trial at MD Anderson. 

 

She helped get FDA approval for the very first chemo she was given (Red Devil, I believe.) She worked for Genentech and helped bring the widely used breast cancer drug, Tamoxifen, to market. 

 

I can’t tell you the number of patients and medical professionals Ellen met who were profoundly moved to know someone who worked on that particular drug that has saved so many women. 

 

She learned that her Leiomyosarcoma had metastasized to her liver and then immediately got on a conference call to Australia to continue working on a clinical trial for a new superbug antibiotic. Me, I sobbed in the corner. 

 

She was treated by Dr. Edwin Choy at the MGH Sarcoma Center. He is a talented doctor, but more importantly a compassionate human being. He called me yesterday upon hearing the news of Ellen’s death. We spent 10 minutes talking about her. He said she was the most knowledgeable patient he had ever had the privilege to treat, and that “he learned as much from her, as she from him.” He and his team always treated Ellen with such kindness, but just as importantly, as a member in equal standing of her own care team. 

 

My beautiful sister donated her tumors to research at the Targeted Therapy Center at the MGH. Her final act was to advance science to cure Leiomyosarcoma.  Dr. Choy aptly described it as a “brave and profound capstone to her professional career.”

 

We have asked in lieu of flowers that contributions are made to the Leiomyosarcoma Research Foundation. 

 

She and I hope that your loved ones are among the fortunate minority that survive this disease. Nothing would make her happier. 

 

My sister came into this world conceived in love and left it held up by the love of her cherished family. 

 

She suffers no more and was indeed an “object of beauty and strength.” 

-- Peggy Eighmy

 

 

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“I am standing upon the seashore. A ship, at my side,

spreads her white sails to the moving breeze and starts

for the blue ocean. 

 

She is an object of beauty and strength.

I stand and watch her until, at length, she hangs like a speck

of white cloud just where the sea and sky come to mingle with each other.

 

Then, someone at my side says, "There, she is gone"

 

Gone where?

 

Gone from my sight. That is all. She is just as large in mast,

hull and spar as she was when she left my side.

 

And, she is just as able to bear her load of living freight to her destined port.

 

Her diminished size is in me -- not in her.

 

And, just at the moment when someone says, "There, she is gone,"

there are other eyes watching her coming, and other voices

ready to take up the glad shout, "Here she comes!""

--- Henry Van Dyke