Photo by Rebecca Gould Photography

Monday, February 1, 2016

To Eat A LOT of Peanut (24 Peanut Challenge)

For weeks, I have been thinking about what I would write tonight.

And now, I find myself overwhelmed by the sheer magnitude of where we have been, where we are, and where we...just might be going.

For Susan -- and our family and friends who have taken this incredible journey with us -- it hasn't been about travel, but about Susan holding on to the courage to eat something she knew could kill in, day out...even after experiencing anaphylaxis -- all while dreaming of...and believing in a better, safer, freer life.  

Susan's determination to see the clinical trial through despite exceptional difficulties and her desire to seek additional treatment while in the 5-year follow-up study goes beyond the definition of brave.  Susan's determination goes beyond the definition of determined, or committed...and it has changed her life.

...and I have no words for how thankful I am that Susan's unwavering commitment to eating peanut(s) has resulted in her tolerating a food that once controlled and defined her -- and our -- lives.

Tomorrow, Susan will eat 24 peanuts -- in one sitting (spaced, but still, all in one sitting, in about 30 minutes).

We have come SO FAR...
  So far that I cannot even begin to think how to encapsulate Susan's journey...

On May 31, 2014, Susan took her first home dose of peanut -- 15 mg of peanut flour, or 6% of a peanut.  While she did not experience anaphylaxis to this microscopic dose of peanut, she barely tolerated it.  From that day forward, and for many weeks thereafter, Susan's torso was covered in a fine rash.  She was constantly nauseas, exhausted and irritable. (Really, who wouldn't be under such circumstances.)

Over the course of nearly two years, Susan has slowly but surely convinced her body to tolerate ever increasing amounts of peanut.  Breakthrough, seemingly random anaphylactic reactions puzzled us...and made us pause and reflect on the seriousness of Susan's quest.  While anaphylaxis gave us pause, it also taught important lessons.

In August of 2015, Susan was cleared to eat foods that might be cross-contaminated with peanut.  At the time, her daily peanut dose was 4 1/2 peanuts.  We celebrated by going to the Oberweis Ice Cream and Dairy Store across from her allergist's office.  The next day, despite the fact that a single orange M & M once nearly killed her, she celebrated turning thirteen by trying not one, not two, not three, not four, not five, but SIX different kinds of M & Ms.

The freedom has been...incredible.  We have flown, Susan has eaten off of a food truck (a samosa, which she loved!), and at Indian and Thai restaurants.  Just today I sent her into the city with a parent I don't know for the afternoon...and she ate at "some Mexican restaurant with great tacos."  (I don't know the name of the restaurant...and incredibly, I don't care.)  There are no words for the way freedom to live in the moment has changed Susan's life, has freed us as a family...has given back my life as a parent.  Just tonight I told Susan she could have "whatever she wanted" off the Sweets Table at her siblings' elementary school skating party (thanks to us, their school have a "No Nuts" policy).

This morning, and last night, and at least once every day since December 15, 2015, Susan has eaten TWELVE peanuts a day...(mostly) without issue.

Tomorrow morning, Susan will eat 24 one sitting.
I believe she will tolerate the 24 peanuts, but in the back of my mind...I do wonder.  
  (How could I not?)

  But even though I wonder, and I suspect I won't sleep well...and I suspect I won't really want to eat breakfast...we will do this -- for this is part of getting from where we were to where we are now...

Susan has been VERY CLEAR that if she passes this 24-peanut challenge, she will go to "full dietary inclusion" of peanut ("maintenance" of a smaller daily dose is also an option, but she's not interested in that).  While Susan is tired of the plain old peanut thing, if she had to, she would do maintenance dosing of 8 or 10 or however many peanuts were dictated...forevermore...but...she wants more.

As for me...I have a few things planned...for tomorrow (Susan has some incredible friends)...and for beyond tomorrow.  While I believe in the promise -- and the science -- of OIT, I also know Susan's journey has been harder than most.  There is no guarantee tomorrow will go well...and while I hope it does, even if it doesn't, Susan's journey has been a success...

And no matter what happens, it is not over, for Susan is determined to completely reclaim her life...and thanks to PRROTECT and OIT, I believe that some day...she will.


  1. So excited for you guys and I don't even know you! We will be there in June we hope. Congrats, good luck and you can DO IT! :-)

  2. Your story gives me such hope...we are in xolair study & start the OIT phase in a month...thank you for sharing! And kudos to your brave daughter!!!!! Fingers crossed for today!

  3. My Ellie is on this journey as well! 5 peanuts today. Thanks for sharing your story. It is so refreshing to read from someone who REALLY understands !

  4. I've been following your blog and look forward to hearing how the test went! My 5 year old son is allergic to peanuts -- his allergy seems much milder so far, in that he hasn't had an anaphylactic reaction.