So I was invited by the Dartmouth-Hitchcock CF care team to be the Keynote at their annual Family night. I jumped at this opportunity right away because I love family nights and I have never been to New Hampshire..perfect! One of the docs (Sasha) picked me up from the airport and I knew I was in good hands when I climbed into her Subaru and ended up at a sandwich shop that uses local Cheddar, great fresh veggies and their own baked bread. She gets it!. Seriously in my mind, a Subaru was what she was going to be driving and I was only praying that lunch would not be KFC or Applebee's..it was exactly what I had hoped.
Now if you know me you know that I love a good ice cream. So when I heard I was coming this way, Ben and Jerry's immediately came to mind. It got out at NACFC this month that I love Ben and Jerry's and I was promised a pint at last nights talk.
Promises Promises...Kathy drove 1.5 hours with this pint of Fish Food in a cooler on ice. It was delicious and made my night, even if it was more like a milkshake. Yummmy!
The Ben and Jerry's theme continued on as I was presented this shirt from Lynn when she announced me. I draped it on the podium just to see if I could maybe score a sponsorship.
150 people showed up last night which is just a remarkable testament to this clinic. I have never seen this many people at a family night and it just really energized me and got me excited. I felt incredible during my talk and was super excited to share my story and the "Blue Lighting" stats...when I was talking about how shitty I felt last month when I was sick and how quickly I turned around once I start back on BL I got a little choked up. A 70% increase in my PFT's in 1 week. Amazing!
To be able to share this info with these parents, patients and families is something that is hard to describe. There is nothing better than to see their faces fill with hope and smiles. So cool! It was great to connect with some young teens who admitted to me that they were not being super compliant. I tried to be as honest as I could with them and tell them how important these meds are. I even bumped elbows with one new friend and this serves as our pinky swear that she would do her treatments.
Ok this pic is amazing. When the program ended these three gals came over not only to chat BUT to invite me to their dairy farms. I saw pics of their cows & the farm and got to know a little bit about dairy farming. I'm still trying to figure out how these 3 have 2 dairy farms but they do and they are cool! I plan to come out this way in July for the Seacoast Safari bike ride so hopefully I can get up and meet some cows!
Highlight of the night was when on stage, the docs and other folks were calling VX-770/Kalydeco "Blue Lightining" without any hesitation. Serisously...we are on to something and I WILL make sure we get this name changed! Picture it, we won't even need the words..You doc will just stamp a blue lightning bolt on your RX pad.
Until next time!
Em
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