April 11th marked my 9th infusion of Myozyme. Things weren’t the same as it should have been. My regular nurse couldn’t make it so a substitute took over. The lead doctor could not be there at the start of the infusion since she had a meeting with the board members of the soon to be formed Philippine Society for Orphan Disorders. More about the society in a future post.
Now while things started a bit shaky and not with the routine that I’m used to, the day eventually turned out ok. The infusion went ok as a whole. We finished a little later than anticipated but not by much.
The highlight of my day was the visit of my Uncle Jonee, Aunt Puri and Grandmother or “Lola” which is the local term for Grandmother. My uncle and aunt live in california and are in town for a vacation. I was touched that they took the time out of their short stay here to visit me at the hospital.
It’s special as well because I got to share at least part of the experience with people that mean a lot to me and who have a done a lot for me as well. My uncle and aunt have been there to support me all these years. Every time we had a chance to go to the U.S. they would take us in their home and welcome us with open arms. They’ve also helped us in the past to look for possible doctors, treatments and the like. I’m really glad to have them share the experience with me. They mean a lot to me.
Other than that everything else is pretty much boring and uneventful. Every time that an infusion goes this way I am thankful. Uneventful is good.
Fight Pompe!