Saturday, February 13, 2016


September 19,2014

Dale and I got lost again today. That seems to be the theme for this period of our lives.
Steven has been moved into a regular room on the seventh floor.  He is receiving nutrition, for the moment, through a tube in his nose.  He will have another swallow test on Monday.  If he passes that swallow test, we will all celebrate!  If he fails that swallow test, a more permanent feed tube will be placed through a small incision in his abdomen into his stomach.  
I am heading home tomorrow morning to celebrate a few moments with my girl and to tie up a few odds and ends at work in case I need to return to the NIH at the end of next week.  Steven will be well looked after by the nurses and Dale.  
Dale and I took advantage of a rare chance to eat lunch together today to sort of finalize some plans in all the changes for the coming week and to wind down a bit together from the hectic four days in the ICU.  We ate in the nice cafeteria (B1), but there was a picture near the bad cafeteria (2nd floor) that I wanted to show Dale.
Unfortunately the elevators that lead from the B1 cafeteria leave you lost once you're on the second floor.
I uttered a sigh of frustration and said, "I cant believe we're lost again!"
A very sweet man turned around to help us, and he said, "Don't worry. In about ten years you'll know this place like the back of your hand."

My sweet son was diagnosed nearly ten years ago. (It will be ten years this spring.) At that time we were told that a cure for VHL was twenty years away. That leaves ten years.I don't want to know my way around this amazing building in ten years. In ten years I want no need for this amazing "house of healing".

In ten years I want, I expect, a cure.

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