Photo by Rebecca Gould Photography

Monday, June 9, 2014

33% Increase (that's 18% of ONE Peanut)

I am up early.

Today could be a very big day.
Today Susan will be presented with 45 mg of peanut protein in the Clinical Research Unit.  She will drink it down in a tropical smoothie (mango, peach, pineapple and Vanilla Tera's Whey protein powder).  

That's 33% more peanut that she has eaten without a significant reaction -- ever.
That's 18% of a peanut.
That's 2.25% of the total goal of peanut consumption for this clinical trial.  So far, and yet, not.

That's a little bit more than one Reese's Pieces piece, which has approximately 39 mg of peanut protein in it.  Just about one tiny piece of candy...and yet, it just might be enough to better ensure Susan's safety.

For while I wouldn't call it real food, it IS significant.
And it feels like a big jump, although really, who am I to say what is a big jump?
Only Susan's body can tell us whether or not this particular amount of peanut is acceptable.

And while it might not have been acceptable in the past (even a mere week ago -- and most certainly NOT as recently as two weeks ago), maybe, just maybe, her body will be able to tolerate it today.

The doses that have come before -- 15 mg, 22 mg, then 30 mg -- are all within this imaginary box I have drawn -- doses at levels Susan might have sort of tolerated at some point already along the way (comparing apples to peanuts, as both of Susan's food challenges have been with cumulative dosing whereas the home doses are all single doses).

Susan has three days of home-dosing of 30 mg of peanut behind her.  
All three home doses were relatively easy (putting aside my hands that shake as I prepare each dose and the intermittent occurrence of the bumpy, rashy, hivy situation on Susan's back, chest and sometimes cheeks).

So, I feel as if we are perhaps maybe on the cusp of something...
     Perhaps maybe today Susan will be able to tolerate the 45 mg of peanut protein.
And then I will wonder if maybe, despite the rocky start, she HAS been receiving injections of Xolair since the outset of the clinical trial.
     And if she CANNOT tolerate the 45 mg of peanut protein...perhaps we will all feel confirmation of something we already suspect -- that Susan is one of the two controls in this small group of nine subjects.  

(While I find myself thinking "what crummy luck," Susan has diplomatically pointed out "SOMEONE has to be the control."  And while I SO DO NOT want it to be MY CHILD, when I look at her -- at who she is, at the way she faces life head-on, with a calm and quiet certainty, I think maybe, just maybe, since SOMEONE has to be the control...she's "not a bad choice."  Except it wasn't a choice at all -- it was...random.  Or maybe, just maybe, the universe reached out and picked her for this particular role.  One never knows...)

And even as I feel that way, I remind myself that I have felt that way before.

I always (to some degree) feel as though we are on the cusp of something...
-- All I have to do is run my hand over her back to feel the ever-present (sometimes more, sometimes less) bumps to know we are pushing her immune system to tolerate something it...DOES NOT like.
-- Further evidence comes in the Zyrtec she is taking twice a day, and the Famotidine she takes thirty minutes before each peanut dose.

Really -- there is no way to know what will happen today.
The uncertainty (for a Type A PLANNER like me) is incredible, immeasurable.

And I am reminded of the lessons the clinical trial is already teaching me, Susan, our family -- maybe even some of those who are following our journey...
-- For now, flexibility is the key, for I never know for certain what the next day will bring...
-- Tremendous personal sacrifice might, just might result in an improved quality of life for Susan...and our family...and she is committed to seeing the clinical trial through, in the hope of bettering her own life...and in the name of science, for she sees "this is not just about me."

As the school year draws to a close, there has been much discussion of summer...of camp, travel, vacation, PLANS.

Susan has remarkably few.

She will eat peanut.
She will skate.

She MIGHT (if we can work out the logistics) volunteer a few hours each week at a local early childhood program.

That's it.
(The list of what she will NOT be doing is EVER SO MUCH longer.)

I can only hope that when she looks back on the summer of her eleventh year that that feels like enough.

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