Wednesday September 14, 2011
Yesterday was one of those days ... Shannon was so excited in the morning because it was the first time since April that she wasn't going to have to take any pills. The girls both went off to school happy. But, by the time we picked Shannon up from school to head downtown for her appointments, her mood had changed. She experienced a bad headache during the day and she was anticipating what that meant. She was right. Dr. Rao would like to keep her on a low dose of steroids for another week and then we will try again to taper to every other day. If the taper doesn't work without headaches, Shannon will just have to continue taking the steroids for a while.
In the grand scheme of things, everything is going well. Blood counts are good, Shannon's weight is holding and her neuro exam was good. But, to a 13 year old girl, all she can see is puffy cheeks and steroid acne and the fact that she has to wear her hair the same style every day to cover up the radiation hair loss. Add to that the fatigue she's feeling this week that kept her from playing hockey on Monday, and it's easy to see why she's feeling down. It's hard enough to be 13 without all that extra baggage. Damn.
But, today is a new day and we will hope it's a better one ...
Posted by Jen