Finding it hard to believe that tomorrow Julia will be 13! Her birthday is technically Feb 29th, but with no leap year this year we call it her non-birthday :) We are going to make a trip to the Smithsonian Zoo in DC tomorrow to celebrate. I was reading her bday list & it broke my heart to see on there, "To get this disease away". Wouldn't it be awesome if that was something we could truly give her. That's why despite the obstacles placed in our path, we still feel like we are doing the right thing by continuing on with this trial.
We got the chance today to meet the next patient in the trial & his family. If we keep up this pattern they are going to just have to make Julia the ambassador of the trial. She was patient # 1 & now she has met & talked to patient #s 2 & 3 & answered any questions they had & showed them her battle scars so they know what they can expect. It's very cool for her to be able to do that. It's also wonderful for me to have other parents to connect with who are going through the exact same thing as we are.
Julia continues to feel good & finally I can say that I think we are seeing her lab results tip in our favor. It's still too soon to do a victory dance, but it feels good to see things going in a positive direction. Still alot of things in the air as far as decisions go, but by monday we should have a much clearer idea of what's next. Really hoping to get an all clear & be able to get her next dose of the study medicine as it was originally scheduled for mar 5th anyway.If that happens then we can expect to come home mar 9th. Feels like such a long way away. We miss home & everyone there, but we are well taken care of here. :)
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