Brittany is a 5 ½ year survivor of an extremely rare disease called Gastrointestinal Stromal Tumor (GIST). This rare cancer is typically found in adults over the age of 60. She is the only pediatric case here in Canada and is 1 of approximately 50 diagnosed cases worldwide.
At the age of 5, Brittany became anemic due to internal bleeding that was caused by an ulcerated tumor in her stomach. She was admitted to The Hospital for Sick Children, where she underwent a 10-hour surgery to remove the tumors. During this surgery, they removed 75% of her stomach and reworked the layout of her G.I. track.
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.
We continued to work with The Hospital for Sick Kids to monitor her for any redevelopment of the disease. We thought the disease had gone away as Brittany looked and acted healthier than we had ever seen her. Unfortunately, a PET CT Scan in February 2008 revealed the disease had reoccurred again. There were a total of 3 tumors, which were removed from her remaining stomach in a 6-hour surgery on May 23, 2008. The doctors were concerned that she would lose the remaining portion of her stomach. The good news is that her stomach had stretched enough from the second surgery and they were able to keep 1 ½ ounces of capacity. So her battle continues to ensure she is eating enough to sustain growth.
The disease is relentless. It has already returned. In August 2008, a follow-up PET CT Scan discovered the disease had returned again.
Pediatric GIST is an unusual type of cancer that doesn’t respond to chemotherapy, radiation or any of the more conventional drugs typically used. However, Brittany was on a first-stage clinical trial, taking a drug called Sutent. We were optimistic this drug would help. She has been switched over to a newer treatment, presently referred to as IGF1R. It is an insulin-based growth hormone receptor that might deal with the disease more effectively. Brittany seems to be on the leading edge of new treatments as she is the first and only GIST patient on IGF1R.
Our daughter Brittany is an amazing person who has been fighting battle after battle and continues to win. We as parents couldn’t be more proud of her bravery and her courage through everything she has faced and continues to face.