Joel received his first dose of LEE011 today.  That’s the name of the drug we crack open, dissolve in water and send through is NG tube.  Today’s treatment will be followed by 4 followup blood draws and 4 ekgs to monitor how his body responds to the drug.  As we’ve stated before, this is a stage 1 trial, so the purpose is testing toxicity to the drug more than effectiveness.  Joel is doing well, though it is heartbreaking when he sees food and I have to remind him yet again that I can’t give it to him, not the same way any more.
I must admit, being here in this chair while Joel sleeps on my chest didn’t seem possible 4 weeks ago as we decided to pursue this course.  There have been many times this last month, when I’ve felt Joel’s miracle is just around the corner.  I don’t think I’ve ever had so much expectation of what God is going to do.  (I usually leave that to Amy.)  But I am reminded daily of how much of a failure I am at predicting the future, and how daily I must choose to rest and to trust that He will never leave nor forsake us, though I don’t have much of a problem these days reminding Him how cool it would be if it was today.
In the meantime, I’ll enjoy Joel today, and wait until tomorrow to remind Him again.


There are 3 comments for this post.

  1. Jim Rutherford on February 4, 2014 8:29 pm

    Not sure why, but this post made my cry! Thank you, Ryan, fior bring so open and honest. Used to it coming from Amy, but maybe it is the Dad part which resonates so much with me.

  2. amyg on February 4, 2014 10:32 pm

    (from Amy) I agree. When I read it, it just moved me. I told Ryan that Joel’s website had been missing his voice for a while now and that he really adds something!

  3. Andrew Bratlien on February 6, 2014 12:56 pm

    I just heard about your family through Ryan’s interview with Adam Sessler at PAX. Your story has impacted me in a colossal way, as the father of a toddler. Please know that my wife and will be thinking of you, following your blog, and praying for your family to find peace and grace in God’s plan for Joel and for all of you. I hope you keep telling your story in any way that you can, because it has reached and moved me and I’m certain that it will many others.

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