I fight for a cure for me & our amazing children❤️

Saturday, June 24, 2017

The Longest Day - my first infusion!

How wonderful it was to realize that the first day of my clinical trial was also The Longest Day! We celebrate the summer solstice as teams around the world honor the strength passion and endurance of those facing Alzheimer's. I originally was sad I couldn't join a team and go for a walk, go bowling, wine tasting, etc. I soon realized that I could create my own team and raise money during my day at UCSF receiving my first infusion! My husband and I chronicled the entire day starting with our fist stop at 7am for coffee at Starbucks. I created an event on Facebook and continued to share the experience and my day. We video taped them giving me the infusion and I had an opportunity to thank everyone for their support over the last year. It really did feel like 'the Longest Day' to me...hours of cognitive testing followed by the infusion and then a long drive home. It was fun though and now we have something to look back on as the trial progresses. We also raised over $600 and I'm very happy about that!

Yesterday (the day after my infusion) I had one of the best days I've had all year! I woke up very happy and full of energy. I slept well the night before and was thrilled to be so alert and present. I don't know if the infusion had anything to do with it, but maybe whatever they gave me helped! It's a double blind trial so no one knows if I'm getting the crenezumab or a placebo. I'm just extremely happy that I'm feeling good and have more energy. It's a two year trial and I'm looking forward to what's next!

This weekend is filled with activities and lunch dates. We are also going to see our pastor and a dear friend preach at Berkeley Presbyterian Church on Sunday. I am so happy he and his wife moved to the Bay Area. I cried when he told us. He married us and it was in his church in Chico that I recommitted my life to Christ. Their move back to the Bay Area is another huge blessing and it's no coincidence that this is happening when we need him the most♰

I'm also almost done with another scarf!  I've been knitting most days and look forward to taking it with me on our trip to Chicago for the National Early Stage Advisory group meeting😀 The blessings bestowed on me each day continue. I'm very excited to see what my role will look like and where I can serve others and help the most.

Family, faith and friends....and doing what makes you happy. That's what my doctor recommended and I try to keep that in mind every single day💜

1 comment:

  1. May your benefits equal all that you contribute to others, my beautiful sister in law������������