Beautiful mommy and Ali at the airport this morning...
Before I begin, please drop by Tripp's blog and give him and his wonderful momma, Courtney, some love and some prayers. Tripp's having a really tough time right now. Thanks.
Sunny California... a little less snow than JFK last week at this time!
Well, we're back in Minnesota! We flew in today. Nice uneventful flight. We were blessed to tip toe through the crazy weather this week. We are staying with our PUCK partners Lonni and Jay Mooreland in Woodbury, which is really convenient to the airport! It was like all of 6 miles to their place. Man, is there some snow on the ground in their neighborhood!
Tomorrow is a big day. I'll tell you more about it after. We are touring the new hospital, having a brainstorm session with the foundation, and going to dinner with Dr. Wagner and John Halberg, the head of CCRF, the Children's Cancer Research Fund. Lots to discuss.
It felt good driving out of the airport today, like I belong here. It is a weird feeling. It's going to be an emotionally powerful trip. I feel like I am returning to the battlefield in some respects. I'm not done fighting. We're not done fighting. Until there is a safer version of the BMT procedure, and until EB care can be more than just palliative care, we're in this. I know I make up unreasonable timelines and goals, trust me. Imagine what it is like for a doctor to take on an incurable disease and KNOW that they are going to lose patients along the way to the cure before they even begin. It would be reasonable for them to let someone else figure it out first. It would be reasonable for me to let EBMRF and DebRA take the lead on funding a cure for EB. I mean, just look at their websites! They are like the big leagues in EB. Who are we? Just a couple of sets of parents whose kids paid the ultimate price for a cure. NO stopping now.
"Be the change you want to see in the world." - Mahatma Gandhi.