Friday, October 8, 2010


It seems like we are always waiting.  Today is Friday and we are waiting on Avery’s new medicine to be delivered to the hospital.  We have a lot of hope in this very expensive medicine. 

The Dr’s told me yesterday it won’t work as fast as the Anakinra, it might take a month.   We might also have to have a couple more pulse therapies in the mean time.  I can deal with that, it’s way easier if we know we might have to go back to the hospital for three days than to be surprised. 

The medicine should be here by fedex by 11:00 am.  I have 3 hours to wait. 

1 comment:

  1. Amy, I am thinking of you and Avery today as you wait for the Rilonocept. Avery's journey is so similar to my daughter's onset, it is chilling to read your posts. I understand everything you are dealing with - including the stickers :) Best wishes to you today. Rosann