Photo by Rebecca Gould Photography

Thursday, January 29, 2015

HALF a Snickers Bar, Anyone?

Today, Susan went to school.  I dropped her off shortly before lunch.  She was still pale, and I could tell she was tired, but, I also think she wanted to see her friends.  I think she looked at her schedule (a block day, so, only half of her classes) and tried to decide when to go based on the academics of it all, but I saw the look on her face when I suggested we get her there for lunch.  She needed something normal.

Today, I had lunch with a friend.
I needed something normal.

Neither my friend nor I felt particularly put-together, so we picked a casual place...which was a good thing, because she ended up on the phone with the school social worker and I...ended up on the phone with the clinical trial coordinator.

Not recognizing the number, I almost let the call I have been waiting for (but did not really expect yet) roll into voice mail...and I am so, so thankful that my friend recognized the number as being from Ann & Robert H. Lurie Children's Hospital.

I hurriedly answered after allowing three or four rings to pass, and was so glad not to have missed the call when I heard the clinical trial coordinator's voice on the other end.  I think I missed the very first few words of what she said, because the first thing I remember hearing her say is "dietary peanut."

My mind spun as I looked at my friend and repeated it back...
Dietary Peanut?
(as in...REAL FOOD???)

My friend listened intently... 

I asked the clinical trial coordinator to repeat she explained that she had also sent me an e-mail with detailed information.

Reeling, thinking I loved what I had heard but not quite believing it, not quite truly trusting it, and knowing that I needed to take notes, I reached for my laptop computer, which I -- thankfully -- had with me.  I pulled up the e-mail and stared at the blurry, too-small attachment she had was exactly the same chart we had seen weeks earlier, in anticipation of Susan passing the 4000 mg peanut challenge and moving into dietary peanut.

Someone had written in, by hand, 1/2 of item.

In just over 48 hours, we have gone from a failed 4000 mg peanut dose and uncertainty about dosing beyond the clinical trial to consumption of real peanut.


In the space of just two patient days, we have a real plan...not just for today, or tomorrow, but...for the future.

As I hung up, my friend said, "Let's go buy Susan a gift."
As we poked around, looking for something perfect, I kept repeating, "I can't believe it.  Incredible.  Amazing -- she can eat real peanut."  As I marveled at our incredible fortune in the face of what had felt like failure, I recognized that I was repeating myself...again and again.

My friend kindly assured me that she would listen to me as many times as I wanted to say it.

Finally, as I was waiting to pay for the most perfect gift, I said to my friend -- I feel happy, I could cry.

Putting her social worker hat on, my friend said, "The clinical trial was never about eating real peanuts or reaching 4000 mg of peanut.  It was always about being more safe and being able to do things like fly and go to the movies.  It has been a success since she has reached those goals."

Success in the face of what appeared to be failure.
Of course, as with much of the rest of the clinical trial, this has been about what we make of it -- about our willingness and ability to see the positive.

When I picked Susan up at school, I had a bag -- the bag had a Snickers Bar and a beautifully wrapped gift box.  As she pulled the Snickers Bar out, she looked at me, puzzled.  I held her look, and suggested she open the gift box.  As she did, realization dawned...and I confirmed, "You can eat real peanut -- starting tomorrow."

We talked about the logistics -- a half of a Snickers Bar seems awful prone to measurement error -- a ruler, a food scale...or, maybe, I offered, it would be better to start with something else.  Susan was clear -- while this has never been about the Snickers Bar, in some ways, it now is, for that's what she wants.

(And her brother has ever-so-kindly volunteered to help out with the other half!)

I took some pictures of Susan, wearing her new bracelets and holding the Snickers Bar I bought for tomorrow morning.  I see uncertainty in the picture, even though she assures me she is "totally fine" about taking her dose in a Snickers Bar.

I told her I thought it was just fine to be a little bit unsure...

And while she may be unsure, I am fairly certain that Susan will eat her half of a Snickers Bar tomorrow morning (a sure Breakfast of Champions!), for this is a hard-earned opportunity.

Tonight, as I tucked her into bed, she fingered her bracelets.  They are beautiful -- and I love what they say.

Go the direction of your dreams.
My possibilities...are endless.

She's not planning to take them off.


  1. This post brought tears to my eyes. Thank you Caryn for what you are doing for the food allergy community. I only hope that someday both my boys will be able to eat half a snickers bar!

  2. Thank you both for your amazing bravery.