Photo by Rebecca Gould Photography

Monday, January 26, 2015

To Eat a LOT of Peanut

Susan has an appointment at Ann & Robert H. Lurie Children's Hospital in the Clinical Research Unit (CRU) tomorrow.

Susan will have her blood drawn.  As per study protocol, I am not privy to the results of her blood draws, but I know they will be looking at her IgE levels.
A year ago, Susan's IgE to peanut was 360.
A year ago, Susan's total IgE was 953.

Susan will undergo scratch testing to assess for a peanut allergy.
A year ago, Susan developed a significant, raised and itchy wheel.

Susan will undergo a 4000 mg peanut challenge.
(That's approximately 18 peanuts, or the equivalent of 1 Snickers Bar or 2 Reese's Peanut Butter Cups or 4 Nutter matter what form it is in, I know it is a LOT of peanut.)
A year ago, Susan failed a peanut challenge after consuming a minuscule amount of peanut protein.  (She had to exhibit very specific symptoms in order to be enrolled in the clinical trial, so, despite hives and abdominal discomfort, she had to continue...)

What will tomorrow bring?

If I am honest, the images in my mind are scary.
-- I see Susan, blood running down her leg as she bravely self-administered a second EpiPen after she pulled the first one out too quickly.
-- I see the red and black emergency bag open, contents strewn. 
-- I see Susan, holding her EpiPen, trying to find the strength, trying to muster the courage to self-administer her EpiPen.
-- I see a haunting image of Susan, curled up, asleep after anaphylaxis during her failed rapid desensitization to peanut in May of 2014. 

Every image I see comes from the last year.
Every image is an important piece in Susan's story -- of our family's story.
Every image underscores how terrifying food allergies are...and how desperately our daughter wants to rewrite her future.
Every image makes me teary, and sad...and proud of Susan's incredible strength.

So much has changed...and yet so much is the same (as it was a year ago).
I so hope (as I type this, tears fill my eyes and my heart pauses, for hope does not even remotely seem strong enough) -- for Susan, and for the countless children living with food allergies, that as much as things are the same...something is now different.

Last year, Susan had a life-threatening delayed anaphylactic reaction to a trace amount of peanut.
Today, she consumed (and tolerated) 2000 mg of peanut at home.
  (That's about 8 peanuts)
So things ARE different.
Yes. different?
Has the Xolair and the Oral Immunotherapy (OIT) that Susan has undergone truly altered her autoimmune system?

In the 51 weeks since we began our clinical trial journey on February 11, 2014, we have turned back time, resetting our own clinical trial calendar from Week 17 in late June of 2014 to Week 0.  

Just recently, I realized that I have allowed the weeks between Week 20 (Susan's final updose to 2000 mg of peanut in November) and Week 31 (tomorrow -- Susan's food challenge to 4000 mg of peanut) to run together.  The edges of one day have bled into the next difficult as it is to fathom, eleven weeks have ticked by and we are now on the eve of Susan's Week 31 4000 mg peanut challenge.

It has been easy (in some ways), not to think about what is coming...

Susan has settled into a routine.
She has taken her daily dose of 2000 mg of peanut protein (measured every so carefully every morning by my still unsteady hands) in a "Smooth Monkey" (think Ben & Jerry's Chunky Monkey) -- chocolate protein powder, a banana, milk and 16 1/4 teaspoons of peanut flour cut with flour -- mostly without issue.

(There was a time when I wasn't sure we would ever get to shade in all these peanuts...)

"Mostly" being the key word.
Susan has had two random episodes of vomiting...and some skin changes.
Nothing terrible, I don't think...but a very clear reminder that every day we are feeding our daughter something that could...kill her (still?).

I know that the 4000 mg peanut challenge tomorrow is the next step in the protocol.
And...I trust our doctors.
  (And yet, I remind myself, this is a study, a clinical trial -- this IS, after all, about more than just my daughter.)

I find myself thinking that given all that Susan has been through in the past year, she "deserves" an easy peanut challenge tomorrow.

And then, I find myself thinking about the child of dear friends who absolutely, positively, without a doubt "deserved" a better outcome.

     and I feel afraid

Years ago, a dear friend's child was in occupational therapy.
While in therapy, the child had an accident. 
The child was hurt.
The child's mother wondered aloud at her efforts to "fix" her child...
  and expressed her fear that the cost had been too great.

When I think about tomorrow, and Susan's challenge to tolerate 4000 mg of peanut, more than anything that friend's cautionary words ring in my ears.

1 comment:

  1. {{Big Hugs}} and Thank You. To you and to Susan. I have two kids with peanut allergies, and I am hopeful each day that something will happen to make my boys just a little bit safer. Because of you and Susan, researchers are able to make changes to protocols to help so many others. I have been following your story since you began, and I appreciate your honesty in your thought process as you move through this portion of your life. There is a possibility that my kids might be able to join a study this year, and I appreciate being able to "witness" someone so that I have an idea of what we could be going through. So thank you. (and good luck tomorrow!).