Sunday, October 11, 2009

STARS GO BLUE: The Omnipresent Threat and the Aftermath of Cushing's

Would you know what to do if your child had Cushing's?

Jackie, Sam's mom says:
"It happened in early August, and quite frankly I haven't had to strength, spirit, or energy to give an update. I was away at NAtional Institue of Health with Jordan for her yearly follow up. I left Sam with her dad and 14 year old sister."

"Sam lay dying for 13 hours with Seattle Children's endocrinologists standing around watching and wondering why the continual 15 mg of hydrocortisone they were giving her via IV wasn't working."

The story of Sam, a child with Cushing's, and her courageous mother Jackie (and sister Jordan, too), is one of the most memorable and heart wrenching stories I have ever heard. Robin, an invaluable member of the Cushing's Help and Support message boards wrote a poignant and brilliant summary of this family's story while giving us the latest news of the challenges Cushing's continue to place on Sam's family. Please read Robin's survive the journey blog . Thanks so much to Robin for retelling a touching story, to Jackie for sharing theIr touching story, and to Sam for living such a touching story.

Once the Cushing's monster finds you, it never completely leaves you alone. It is always lurking in the back of your mind, even if everyone around you has forgotten it. THIS possibility is what drives Cushies mad with worry and sadness. If we can't get the people who love and support us to help us, we live in constant fear of being alone when we can not do for ourselves and when we need help the most.