I just wanted to take a moment and share our story. Our story is actually about my son, Bryce. Bryce developed a dry hacking cough in February of 2016. The doctors thought it was Whooping Cough, which it was not. We were told to watch him and report back with issues. At that time he started with low grade fevers everyday. Blood work showed he was fine. Finally, in April, I pushed back very hard because he had a diminished appetite and was very lethargic. In April, the doctor finally felt something was wrong and when doing a physical exam felt something in his abdomen. Bryce was sent for an emergency ultrasound. At that point several masses were found in his abdomen (which turned out to be one very large mass). Bryce was immediately admitted and the day before his 13th birthday he had surgery. The doctor went in to remove what she could but came back saying it was too large and angry and could not remove the mass. About a week later we were told that he had GIST and that it was malignant. Our local hospital, Lehigh Valley, stated that they had not dealt with this diagnosis and felt it would be better to seek further advice and opinions for help at other hospitals. After meeting with a surgeon at CHOP and Dr. Janeway in Boston, we were told to wait and see what type. When it was discovered that it was Wildetype we were informed that our only option was surgery again. Bryce was admitted to CHOP (Children’s Hospital of Philadelphia) and sent for a 7 hour surgery. They removed 1/4 of his stomach, rerouted his intestine, removed his gall bladder and omentum and some lymph nodes that showed sign of cancer. Overall, it was a successful surgery. The mass was about 12 cm  and the doctor even took photos because he stated it was one of the largest masses he had ever seen. Bryce’s mass grew very quickly in a short amount of time. He went from February and March to a doctor not feeling the mass to April where the doctor could physically feel the mass when doing an exam to May where he was fully distended and you could see the mass protruding. After surgery it was discovered that they could not safely remove a part of the tumor from his liver. In addition, it was discovered that the cancer had metastasized to his liver and the main artery to his liver. The cancerous lesions are throughout his whole liver so removal of part of it would be futile and he does not qualify for a transplant. Due to the rate of growth, they have Bryce on a regiment of scans every 2 to 3 months and every six months he needs to have a full body scan. He had his last surgery in May of 2016 so we are approaching a year of no growth. He is not on any medications because he is stable. He experiences pain on his right side on a regular basis and from the surgery deals with some mean abdominal issues and has trouble digesting a lot. We are eating as clean as we can. Bryce also deals with extreme fatigue on days. Bryce has an SDHA mutation. It has been discovered that my husband and my daughter also have the same mutation and are now under medical care and observation. My husband has been discovered to have a lesion in his liver. They are waiting 6 months before they rescan to see if there is any growth. For now, we keep hoping for a miracle and making the most of everyday. We have made many memories and have learned to appreciate more. Our life has completely changed in the matter of a year. My days consist of dealing with medical bills, doctor appointments and making Bryce comfortable. Bryce refuses any pain medication because he already has a hard time with his digestive system and he hates how pain meds make him feel. I appreciate every single person that shines a light on GIST. As a social worker I have always advocated for others and now my job is to advocate for him. Due to appointments and him feeling sick a lot I have quit my one job and now work as I can. We have tried to bring awareness to GIST in our community by spreading the word. He has met with the Philadelphia Flyers after they heard his story. He had a video done by the Lehigh Valley Phantoms (https://youtu.be/5DAqSI7dwYM) and it has been shared with others in the community. Whoever listens, we tell. We have purple bands that we hand out to everyone so they remember Bryce and his story and share with others that there are still illnesses and cancers out there that have no cure or course of treatment. It is truly mind boggling.