In honor of those who have lost their battle to desmoid tumors and those currently battling a desmoid.

Sue Horan - A woman of courage

I vividly remember that sunny and brisk morning last November, standing out in front of the Art Museum, looking at my family gathered together as Team Horan for the 1st Annual Running for Answers Race. It was an emotional moment; a stark reminder of just how far I’d come. It had been almost a year since my most recent surgery to remove my desmoid tumors, and here I was, tumor free and ready to race.

I was first diagnosed with a desmoid tumor in my left chest wall in the Fall of 2005. I’d been in a very minor car accident returning home from graduate school, and a few days later I noticed a lemon-sized lump on my rib cage. After many appointments with various specialists, tests, and a biopsy, I finally had a diagnosis. But it left more questions than answers. I’d never heard of this tumor. Was it cancer? How do you treat it? Will it come back?

I ended up having major surgery in November of 2005 to have the tumor removed. Along with the tumor, four of my ribs, some muscle, and part of my diaphragm were removed as well. The tumor had come very close to my lungs. Surgery was a success—my margins were clear and the tumor was gone. Yet a year later the tumor had come back with a vengeance. I now had two tumors that were slowly growing and causing me an increasing amount of pain.

I spent the next few years monitoring the growth of my tumors with my oncologist, and trying to manage the near-constant pain. I was frustrated that I never felt fully healthy; I just wanted the pain to go away and I wanted to be normal like everyone else. I didn’t want to feel embarrassed to wear a swimsuit where people could see my scars.

My second surgery was in November of 2009 at Memorial Sloan-Kettering in New York City. Once again, the surgery was a success and the margins were clear. The recovery period was nothing short of excruciating. More bone, muscle, and tissue were removed, along with my entire old scar, so my skin was stretched very tightly. I never would’ve gotten through any of this without the unwavering support of my husband, family, and friends. They have been there for me through all the physical and emotional ups and downs of fighting this disease, and they continue to support me every day.

I’m proud to say that I have been in remission since that second surgery. And I’m currently 7 ½ months pregnant with a baby girl! The pregnancy hasn’t been easy—because of all the muscle loss, scar tissue, and reconstruction, it’s been very painful for me. But every bit of pain is worth it. I feel so lucky to be healthy enough to be pregnant at all.

I’m due in September. So that means keep an eye out for Team Horan at the 2nd Annual Running for Answers—but with a brand new member!

Jeanienne Vanessa Palmer

Jeanienne Vanessa Palmer was born on October 24, 1978 in Santa Fe, New Mexico to Charles David and Elizabeth Palmer. As a young girl, Jeanienne quickly discovered her innate creativity, personal style, and was always a rebel with a cause. Whether it was campaigning to save the whales at age 10, or working for a non-profit organization benefiting those living with HIV/AIDS, Jeanienne’s dedication to what she believed in was unrivaled.

During her teenage years, Jeanienne's love for travel took her on trips across the country, as well as to Europe. But it was her sense of adventure that finally brought her to New York at the tender age of 23. It was in this city that Jeanienne grew into adulthood, formed eternal friendships and inspired all around her.

At the age of 25 Jeanienne was diagnosed with familial adenomatous polyposis (FAP) and underwent surgery to remove her colon. It was during the surgery that her physicians discovered she also had intra-abdominal desmoid tumors – a variant of FAP called Gardner's Syndrome. Because little was known of this disease, Jeanienne sought both conventional and unconventional methods of treatment, and it was during her research that she discovered the Desmoid Tumor Research Foundation.

Despite Jeanienne's battle with desmoid tumors and their complications, she fell in love with running, entering her first 5K in support of a young man with cancer. She then went on to join New York Road Runners and began training for the 2010 ING Miami Marathon. Jeanienne raised thousands of dollars for the Leukemia and Lymphoma Society and bravely crossed the finish line on January 31, 2010 after 26.2 miles – one of her proudest moments.

Throughout her life she fought for what she believed in, loved her family and friends ferociously and truly lived every day to it’s fullest. Those who were lucky enough to know Jeanienne loved her for her wit, creativity, loyalty and bravery, while those who only briefly caught a glimpse of this shining star were struck by her sass, beauty and style. On the morning of October 20, 2010, after a fierce battle with desmoid tumors, Jeanienne took her last breath and moved on to her next journey. She taught each and every one of us to embrace life and to cherish each and every moment. Jeanienne's passion for life will never be forgotten and lives on in all of those whose lives she touched and changed forever.

Amanda Hoffman, desmoid survivor

Dance was a huge part of my life for 23 years. I competed nationally in middle school and high school and was thrilled to be able to keep dancing and choreographing in college, and to run my college dance club. I knew I didn't want to make it a career, but I always thought dance would be a part of my life - part of my stress relief, my creative outlet and fitness. The last time I danced was March of '09 and it terrifies me to think that may be the last time I ever dance again.

Five years ago, just before starting my senior year of college, I was diagnosed with an Aggressive Desmoid Fibromatosis tumor in my calf muscle. At the time, the diagnosis came with relief because we were told it was "benign." But over the next nine months, the tumor grew significantly and only a few weeks after my college graduation I was having major, invasive surgery to have it removed. With extremely limited information available on this rare type of tumor, even from my doctors, I was simply eager to get rid of this "thing" and get back to my love of dancing and start the normal life of a young professional as soon as possible. But not even five months later, the tumor returned in an even more complicated and more painful way. Over the next two years, I went to five hospitals, saw countless doctors, and eventually underwent two kinds of chemotherapy treatments, which both made little impact.

The tumor is now pressing on major nerves in my leg, making my knee feel useless when active. I can't run, jog or even straighten my leg without severe pain. But in 2009, I attended DTRF's annual gala and I can honestly say that the experience changed my life. For the first time, in three years, I finally met other desmoid patients - my age, older and younger, from all over the country - and when we sat down in the same room and talked about our experiences, I felt a great sense of community and, in the same instant, a great sense of purpose and perspective. Yes, I've had my battles, however, compared to many other desmoid patients, I consider myself lucky.

Since I am still able to live a happy and relatively normal life while living with my desmoid (who my friends know as "Tabitha"), I wanted to do my part to help raise awareness and research dollars. So last year I put together "Drink to Defeat Desmoids!," happy hour fundraising events for DTRF in downtown Washington, D.C. The first two have been successful and I hope to have many more in the future. As I face my first MRI in over a year next week, I know I'm not alone. My amazing family and friends, and the support of DTRF and the new friends that I've made, have inspired more strength in me than I ever thought I had. I am slowly coming to grips with the fact that having a desmoid is just a part of my life that I need to accept, and that accepting this fact does not mean this tumor defines who I am - although the experience may be adding to the person I am, and the person I will become.