This is a collection of posts by LRG members who have faced the challenges of SDH-deficient GIST and other non KIT/PDGFRA subtypes. If you are interested in sharing your experience for the benefit of others, please email Mary Garland, Director of Communications at mgarland@liferaftgroup.org.
Graduating, Birth, Marriage. What Can’t GISTers do?
Pediatric GISTer, Sile Bao graduated on May 19 and already started her first job at Princeton University in July. Ashley Young Vincent, gave birth to a beautiful baby girl named Lily on June 24. GISTer Mo Collins, married her partner, Alex Skuby on June 25 in a lovely ceremony.
Member Story – Meghan Marre
Mary Marre says her daughter Meghan was diagnosed with GIST in the fall of 2002, just a few weeks before her 21st birthday. All through high school Meghan was anemic; she was also plagued with stomach problems. Each time a doctor would say it was heavy periods, ulcers, heartburn and the like … this to a child who outwardly seemed so healthy.
Rachel Gilbert Discusses GIST at Teenage Cancer Trust Conference
Rachel Gilbert talks about GIST at the Teenage Cancer Trust Conference. Gilbert was diagnosed with GIST when she was 15.
Josalin Dunn and Dr. Daniel Vasella at Life Fest 2010
Josalin Dunn presents the Humanitarian of the Decade Award to Dr. Daniel Vasella at Life Fest 2010.
Member Story – Brittany Brennan
Approximately 2 ½ years later, Brittany was 7 years old when the disease recurred, this time in her liver. The course of action at that time was to use a drug called Gleevec, to control or shrink the tumor. This drug has been used with some success in adult GIST, but failed to help Brittany. A few months later Brittany had her second surgery to remove the tumor from her liver and during that surgery they found 3 more tumors in her stomach. They were successful in removing the 4 tumors after 12 hours in the operating room… this left her with 2 ounces of stomach.
Member Story – Chandell Fuqua
Fuqua doesn’t talk about it often. He doesn’t bring it up unless asked, and even then he offers only a brief explanation. He fears he’ll be known more for his illness than his accomplishments, even when his achievements place him among the top track athletes in the state and in the Lawrence High record book.