Monday, February 10, 2014

Medical update: drug trial end

Hi everyone,

As many of you may have heard, after meeting with our medical team, and weighing my own experience with the drug trial we began in September (little evidence of benefit and some evidence of detriment), Amy and I decided to end that drug trial and return to our search for therapies that will benefit at my condition. We feel we are already making progress and hope to update you soon. We are deeply grateful to the doctors and administrators at the University of Utah who made this trial possible for us, and to all of you for your support, prayers, and faith. You are truly heroes.



Repost (from 10-7-13): medical trial begins, fundraiser thank you!

The following is a repost of a blog entry written on October 7, 2013 that was accidentally deleted:


Hey all,

I apologize for not having written in quite some time. Following our return from Israel we spent the remainder of the summer visiting family and friends in Utah. We also used this time to meet with doctors at the University of Utah to explore irregularities, not known to be typical of ALS, in my lab work. Because many of these irregularities are more commonly associated with autoimmune disorders, we began to re-explore the idea of immunosuppressive therapy. Our exploration "just happened" to peak within days of a lecture at the University by my Boston-based neurologist--a lecture that included the theory that ALS may have a number of onset mechanisms including autoimmune irregularity. We also learn from her the details of an FDA approved drug trial of immunosuppressive therapy for ALS designed to test this.. Working directly with her, my University of Utah neurologist sought out and gained approval to treat me according to the FDA approved regimen. After rigorous baseline test, I began a six-month protocol on Friday, September 27th. My initial impression is that my body is handling the medication relatively well… I'll be sure to provide more detailed updates as we progress.

If this trial was the medical highlight of the past couple weeks, the clear emotional highlight was the outpouring of love and generosity we saw in the course of a fundraiser thrown for us by our dear friends Jenny and Paul Ahlstrom. The Tuesday before the trial began, Paul and Jenny called and informed us that they were launching a fundraiser for us. They asked for the email addresses of close friends and family, and an estimate of the costs we might incur for this trial. They launched the site on Friday morning just hours before my treatment began. Over the next 24 hours Amy and I were overwhelmed to the point of tears all day as family, friends, strangers, and numerous anonymous donors expressed support, hope, and faith for our family. The initial funding goal of $28,500 was raised within 24 hours, and you haven't stopped there…

I personally have never seen anything like this. I find myself overcome and unable to think about you people without becoming emotional. I find myself lying in bed at night, unable to sleep, thinking about the thoughts you shared on the site. I find myself wondering about you anonymous donors, and how I can possibly find you and thank you. I find myself thinking about whether I myself have missed similar opportunities to overwhelm someone as you have overwhelmed me. I made the following attempt to recapture some of the effect of this experience on me:

Our Design

Now clearly I see that the good around me exceeds my beliefs' incline,
as mere mortals I know surprised me and showed their actual nature divine,
when a trial I'd embraced as given by grace and thought I shouldered with few
was taken by many as if were were anything I trading places would do?

How do I allow, with fear on my own brow, expressions of faith unashamed
from strangers complete with no cause for deceit, my burden communally claimed?

Why so sublime, such a blow to my mind, to learn of prayers for me by many
when in weakness of self my village I'd shelved, to be used maybe later if any?

Truly, how do I live when Angels would give everything to give me their turn
when these Angels, though clothed in mortality's robe, love I unworthily earn?

It seems all too clear the debt is to dear, this burden giv'n not for repay,
but to be passed along when sufficiently strong, I'll be Angel on love's needful day

I'll cry for my brother and weary the father though I see at best through dark glass
reaching out to new length seeking for a strength to act, though unsure, I will act!

My fear put aside, imperfection in stride, I'll express unashamed what I know
with unfurrowed brow, empowered somehow, finding grace lights my steps as I go.

Though I've only stooped shoulders, twas never a boulder so big it could never be moved,
no trial built so broad, by man or by God, that together we'll never improve.

I will not forget, though we are mortals yet, that in each of us rest the divine
that kernel is so good that, once understood, we believe and achieve, our design.

I love you and thank you all.