Monday Night - 7:00pm

Changing of the Guard

Deb and I have switched places and now I'm with Alyssa at URMC as she continues the infusion process. It typically takes six hours, but we're not sure what kind of rate they have her on, so it could be as late as 10:00pm till she is finished. Unfortunately, she can't trade places with anyone, for a much needed break. This will be at minimum a 12 hour day and could go as high as 14. But we're looking at these as "steps forward" toward her goal of regaining her life.

As most of you know, I started writing these posts when Alyssa fell ill in 2009. It was a way for us to keep everyone informed as well as provide me with an outlet for emotions, frustrations and quite honestly, fears. With a blog, you never quite know who your audience is, but hope that you are providing information that's interesting as well as informative. Our source site, Blogspot has now added a feature that allows us to track geographically where our readers are located. Over 1,000 are scattered throughout the US, but a large number of followers are from Japan, Canada, Germany, Russia, Ecuador (cousin Lisa,) Singapore, Spain UK, etc. Our assumption is that they are searching Soliris and hitting on our site. Alyssa's and two other similar a-HUS/Soliris transplants (Brandi in Iowa & Jose in Spain) are being watched very closely by both the medical community and families dealing with this awful disease from around the world.

A toast - May the information that we bring you continue to trend positive and the list of successful transplant names grow longer!
dd