Photo by Rebecca Gould Photography

Saturday, July 4, 2015


Over the last eighteen months, I have become somewhat active in a number of different food allergy Facebook groups.  I joke that I am both an accidental blogger and an accidental "Facebooker" -- but the truth is that it is true.  Two years ago, I barely knew how to sign into my Facebook account, and I followed blog.

Today there have been several posts on the various Facebook groups regarding food allergies and freedom.  

Those posts got me thinking...about Susan, about the freedom we have as Susan's parents to pursue the care we think is in her best interest...and about Susan's on-going quest for greater freedom from her peanut allergy...

In June, I wrote to the doctors running PRROTECT [Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial (supported with Xolair)]:  "While Susan appreciates the freedoms she is likely to have as the result of the clinical trial (she has already, for example, been to several movies in the theater and we are talking about taking a short flight), she wants greater freedom."

That's right.
Greater freedom.

And she's willing to do whatever it takes -- including eating a daily dose of peanut that her body does not always tolerate very well.

During Susan's enrollment in the clinical trial, I often had people question our decision to allow Susan to stay in the clinical trial -- especially as the number of anaphylactic reactions she experienced grew.

In a blog post in January, I wrote:  "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...)"

In the months since then, I have continued to be asked to defend our decisions to those who do not see it clearly themselves...and I always find myself explaining that we have allowed Susan to guide us in the decision making -- and she has aways, without fail, even immediately following an anaphylactic reaction to her dose, wanted to see this course of treatment through.  I have found myself explaining that it must be more awful to live with life-threatening food allergies than I can even possibly imagine, for Susan to willingly put herself on the line (I will not say at risk, for I have come to know with certainty that one thing Susan has gained from this clinical trial is confidence...the knowledge that she absolutely knows what to do in an emergency) every single day.

And then, earlier this week, on the last day of the clinical trial, I got to see it for myself, in black and white.  

[Since the clinical trial began, every so often we have been asked to complete repeat surveys regarding Susan's peanut allergy and it's effect on the overall quality of her life.  Susan, my husband, and I each complete our own, independently.  Once, I "oversaw" some of Susan's answers, and as I wrote in January, I felt terrible about the fact that I accidentally saw Susan's completed survey...and even worse about what I accidentally learned.  "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."]

During our last clinical trial visit, we were asked to complete the same survey -- for the last time.  This time, I asked for -- and received -- Susan's permission to look at her answers.  I was prepared to let her look at mine if she asked, but...she didn't.  I put my social worker hat on and talked about it with her as I looked at it...and with her permission, I photographed it, knowing that some day, I would write about it in its entirety.

Toward the bottom of the second page of the three-page survey, I saw -- in a single question -- the reason behind Susan's determination to fight her on-going personal war against peanuts.  On a 6-point scale, with 6 being the worst, Susan reported a 5 ("very") in response to how disappointed she is that she has a peanut allergy.

I can say with confidence that our country's freedom came as the result of leaders with vision, commitment and determination fighting a series of long, hard and (I am sure) sometimes frightening battles.  Freedom did not come easily for our country, and freedom from Susan's peanut allergy is clearly not going to come easily to her.  But that does not mean it is not worth the fight.

Susan does not have the freedoms most of us living in this country have -- she cannot sit where she wants in the school lunchroom, she cannot just go out to eat, she cannot make spur of the moment plans, until recently she NEVER went to the movies, she without thinking about countless things:  the risk of exposure to peanut, what she will eat when, and whether or not she is making safe choices.  We do not fly (an emergency landing after Susan experienced anaphylaxis from airborne exposure to peanut permanently "grounded" Susan), and we rarely travel -- and when we do, it is with countless extra precautions, special cleaning requests, a pre-determined list of very safe restaurants (Chipotle and Qdoba top the list)...and a cooler of food.  Susan cannot go anywhere without emergency medication -- which she carries in her purse...and which she wears at all times...even in our own home.  

Today, I am thankful we live in a country where we, as Susan's parents, have the freedom to seek the treatment we believe is in her best interest.

And, today, as I sit here writing this, I truly believe that some day, Susan will have her own personal "Independence Day."  I am confident that what it takes to achieve such independence makes the victory all that much sweeter, and I am committed to standing by Susan, supporting her however I can, as she continues to fight her own personal war against peanuts...moving from clinical trial to private OIT (oral immunotherapy).

Susan's journey toward freedom from her peanut allergy has not been fast, nor has it been easy.  But, isn't anything this potentially life-changing worth fighting for?

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