My name is Linda and I am Jessica’s mom. Jessica was diagnosed with a rare type of sarcoma in January 2007 called Gastrointestinal Stromal Tumor (GIST). GIST is a rare cancer affecting the digestive tract or nearby structures within the abdomen. GI stromal tumor, or GIST cancer, is a sarcoma. Sarcomas are cancers that grow from cells of the body’s connective or supportive tissues such as bone, cartilage, tendons, nerves, fat, muscle, synovial tissue (tissue around joints), or blood vessels. Many cancers are carcinomas, not sarcomas. Most people have never heard of this type of cancer. I had not heard of the name before she was diagnosed with it. Not only is GIST a very rare cancer, the type of GIST that Jessica had was even more rare. It was determined that she had Wild Type/Pediatric-Like GIST. This type of GIST normally affects young girls and women, however boys and men are not excluded from this type of GIST it is just not as prevalent in males.
Because GIST is such a rare cancer, it is considered an “orphan” cancer and as a result does not receive the funding or participation in clinical trials and new drugs that other more well known cancers receive. Prior to the year 2000 there were no approved drugs at all for GIST. Most of the time it was misdiagnosed as something else completely and surgery was the only hope for most patients. In just a few short years they have come up with several new drugs to combat GIST. I am confident that they will find a cure very, very soon. New drug therapies are coming out every day.
That is one of the reasons that we have formed the “Out Of The Woods Foundation”. Originally we began our foundation to help Jessica and her husband Jason with medical and travel expenses and to donate a portion of the money raised by the foundation directly to the research labs that need funding to continue searching for new and better drugs to fight this terrible type of cancer. Jessica lost her battle with GIST on February 26, 2012, and now our fundraising are directed to research as well as a scholarship for education for people who have been diagnosed with any type of cancer or major life altering disease to go to college or technical school. It is also for someone with a life altering disease or handicap to go back to school to learn a new trade or begin a new career because they can’t do what they did before they were ill to earn a living. Jess had not been able physically to go back to her previous employment but was able to complete her master’s and intended to go back to work eventually. Unfortunately things didn’t work out for her, but she was extremely proud of her achievement and always felt that others should be able to further their education and follow their dreams. This was her dream and we intend to fulfill it for her.
When she began this journey, there were not any specialists in Pittsburgh for this disease, but in the past few years UPMC has added a Sarcoma Department to the Hillman Cancer Center. We have traveled to New York City, Philadelphia, Detroit, Bethesda, and Boston in search for a doctor that specializes in GIST. Now there is somewhere local for sarcoma patients. Jessica participated in a clinical trial at the Hillman Center in Pittsburgh and we were very hopeful that the treatment she was on would stabilize and eventually stop the growth of the tumors. Her body was just too weakened by that point. It just gave out.
She had been very brave in this fight for her life. She truly was a fighter. I love her more than words can express and I have to say that she is not only my daughter, but my best friend.
I would ask that you check out the links to the websites for GIST. There you will find detailed information about GIST as well as research organizations that you can donate to if you are so inclined. Or you can donate here through Paypay or by sending a check to “Out of The Woods Foundation”, 4 Revere Road, Rosslyn Farms, PA 15106.
Thank you for visiting the Out of the Woods Foundation.