Photo by Rebecca Gould Photography

Sunday, January 25, 2015


It has been nearly two years since we learned that Ann & Robert H. Lurie Children's Hospital would be a site for the PRROTECT clinical trial (Oral Immunotherapy for Peanut Allergy supported by Xolair).

It has been nearly eighteen months since I resigned from my job in anticipation of the clinical trial (knowing, but absolutely truly NOT -- even remotely -- understanding what was on the horizon).

It has been more than a year since we scheduled Susan's intake and screening appointments for the PRROTECT clinical trial at Ann & Robert H. Lurie Children's Hospital -- and I still remember how excited I was that day.  (It wasn't until later that the reality of the failed food challenge for peanut required to be enrolled in the clinical trial set in...)

I have more indelible images in my mind from the last year than my whole lifetime.  

-- Brave, in my mind, will always be the image of Susan (hours after her failed peanut challenge required for enrollment in the clinical trial), self-injecting her EpiPen not once, but twice..the blood running down her leg...the scared and uncertain look on her face...terribly terrifying images for which I am thankful and grateful and...sad.  (NO ONE would pick this for a child, any child...of that, I am certain...and yet, I am also grateful beyond words for the knowledge Susan now has that she has successfully self-administered her EpiPen.)

-- Stoic, in my mind, will always bring to mind the image of Susan, shaky and pale after vomiting a 45 mg dose of peanut just two hours earlier -- bound and determined to compete the program she had prepared to skate.  (While it wasn't Susan's best-ever skate, it might well be the one I am most proud of, as she went after what she wanted, showing her grit and determination every second of the way.)

-- Determined, in my mind, will always bring to mind the image of my shy, quiet, humble Susan standing in front of nearly 500 guests at FARE's Spring Luncheon sharing her food allergy story, openly talking about how her food allergies have limited her life, and how terrible anaphylaxis is -- terrifying in and of itself and even scarier not knowing for certain that her medication will work 

Over the last year, I have accumulated memories no parent wants to have.  I still remember how small...and insignificant...and vulnerable Susan looked as she lay sleeping after anaphylaxis during her failed rapid desensitization to peanut.  I remember watching the machines that monitored her vitals, feeling both thankful to have them and sososo scared that we needed them.  I will never forget the intense cold that enveloped me as I sat there, shaking as I kept watch on the machines that monitored my dear Susan, before climbing in next to her to hold her tight -- to keep her safe, I hoped.

The last year is comprised of the countless nights I laid awake watching Susan breathe, listening carefully for even the slightest change...and the mornings I allowed her to go off to school after taking her peanut dose, trusting those there to care for her as if she were their own.

I have changed in immeasurable ways in the past year.
As difficult as the last year has been, I would not change it -- not one bit, for the hardest, scariest moments are the very reason these clinical trials are so important...not just for us, but for everyone who is desperately seeking options.

I have learned how rapidly anaphylaxis can take a child, shattering families, schools and communities and terrifying those of us who are charged with keeping our children safe.  I have vowed to not ever have to live with the regret of having waited to administer epinephrine.

I have lost friends who do not -- simply cannot or will not -- ever understand or accept our decision to pursue treatment for Susan through a clinical trial ...and I have gained a community of people who -- like me -- are searching for a safer passage for their children. (I have come to understand the value of true friends, and am beyond thankful for those in our circle who have supported us even if they may not fully understand or agree with our decision...)

As I look back on our year, and think forward to Susan's upcoming food challenge (4000 mg of peanut), I find myself remembering a silence that I half-wish I had poked at a bit (social worker hat on).  As part of the clinical trial, we have been asked to complete questionnaires at various points.  Our first questionnaire was administered during our intake visit.  Mine was entitled "Food Allergy Quality of Life -- Parental Burden Questionnaire."

I don't know exactly what Susan's questionnaire was entitled, but I still remember the effort it took for me NOT to put on my social work hat and probe at her answers that day. Her private answers.  

I know the effort it took (takes, if I am perfectly honest) not to take advantage of the fact that I have easy access to my husband's answers in a scanned copy of the questionnaire in my e-mail...that I have not, and will not ever -- despite my curiosity -- open.

One thing that has NOT changed about me this year is my sense of what is right and wrong.  (For better or for worse.)  
My questionnaire is mine. 
Susan's questionnaire is hers.  
My husband's questionnaire is his.
Curious as I am, I would never go there.  I just don't think it is right -- not even to poke and prod at it with that social worker hat of mine on...

I am sure at one point I knew that we would see the intake questionnaire (or some variation of it) again during the clinical trial...but, I had lost track of it, and so I was a bit surprised to be presented with it during Susan's Week 18 updose appointment.

There were questionnaires to be done.
And...because there was no school that day, I had Susan's younger brother and sister along with me.

I completed my questionnaire.
Susan completed hers.
I did NOT look.
I swear it.

Even to this day, I remember -- yet another indelible image -- the moment realization washed over me...

For despite my very best intentions, despite my certainty that Susan's answers needed to be her own...and only for her eyes (well, at least not for my eyes, for surely others have seen and reviewed them...)...I saw a part of her questionnaire.  It happened so fast -- as I turned away from the sink, after washing my hands...

It wasn't much, really...just a part of the first page and even that was more a sense than anything...but, in that split second where I was seeing what was not for me to see when I was torn between once having seen wanting to see more and knowing that it was simply not right for me to allow myself to look beyond what I had accidentally seen.

I tore my eyes away.
And my heart sank.

For what I had seen was more than enough.

The answers are scaled, from 0-6, with 0 being "Not limited" or "Not troubled" and 6 being "Extremely limited" or "Extremely Troubled."  While my questionnaire was skewed toward the middle, with answers of "Moderately limited" or "Moderately troubled" and "Quite a bit limited" or "Quite a bit troubled," which are scores of 3 and 4, Susan's answers were skewed toward the 5's and 6s, with most of her answers being "Very limited" or "Very troubled" or "Extremely limited" or "Extremely troubled."  

And, as much as I wished I did not know, the questions Susan had answered were about eating out, and about being different from her peers...about social functions and gatherings.  

I felt heartsick.
I still do.
Every time I allow myself to think about it.

My strong, kind, compassionate and brave Susan is saddened and [very] troubled every time she is different, left  And because she is the kind of person she is, she hides it.  

I always wondered if Susan was as determined to see the clinical trial through -- even when things were so difficult last summer -- as she was because of how difficult it is to live with food allergies.

And now I know.

No comments:

Post a Comment