About Becoming Your Child's Healthcare Advocate
On June 4th, 2003, our three year old daughter, Bethany, was diagnosed with Ulcerative Colitis (UC) and Primary Sclerosing Cholangitis (PSC). PSC is a disease which destroys the liver. Bethany was immediately put on a number of medications and scheduled for an upper GI, endoscopy, colonoscopy, MRI, and a liver biopsy. Before that day, Bethany had never truly been sick.
As we walked back to our car that afternoon, we had more questions than answers. What is Ulcerative Colitis? PSC? When, not if, will Bethany need a liver transplant? What about all these medications? Will they help, hurt? What about the side effects?
Fourteen years later, along with too many procedures to count, five bouts of septic shock, a liver transplant, a second surgery five days after transplant, cancer, chemotherapy, and four biliary tubes for four months, Bethany is
healthy, happy, and getting ready to graduate high school and head off to college to be a nurse. During those very difficult years, our family had to learn how to do more than just survive. Her diagnosis that sunny day in June 2003 affected our family profoundly. We continue to work through the consequences of her illness even to this very day.
It is for this reason I have created Becoming Your Child's Healthcare Advocate. This website is dedicated to helping families learn how to take care of themselves and their sick loved one during these difficult times.