Photo by Rebecca Gould Photography

Sunday, May 24, 2015

Sobering Reminder

There is not a day that goes by that I do not think about food allergies.  While I do not (thankfully) live in a constant state of anxiety, I am well aware of the power of food allergies -- the fact that a single bite of the wrong thing can lead to anaphylaxis, or even death.  For me, Susan's daily peanut dose is always a time for reflection on the power of food allergies.

Yesterday, there was the terribly sad news about another food allergy death.  An 18-year old boy named Dylan Hill, with a known nut allergy, died an hour after eating at an Indian restaurant in South Yorkshire.  It is believed that he suffered an anaphylactic reaction after being exposed to nuts.  He did not have his epinephrine with him.

Every single time I hear about a food allergy death, I go still.  I think about the life lost too early, unnecessarily, and about those left behind.  

Every single time I hear about a food allergy death, I wonder what could have been done to prevent it...

Names of children who's lives have been claimed by food allergies -- Chandler Swink, Natalie Giorgi, Derek Landon Wood, Joseph DiNicola, Scott Johnson, Giovanni Cipriano, Katelyn Carlson -- live within me.  Sadly, the list is staggeringly long...and each story resonates with me in it's own unique way...underscoring my fears about Halloween, not having epinephrine, school borne exposures and...eventually, college.  With every story comes new risks to address, new fears to integrate into our daily lives.

I am ever so thankful to the parents of children who -- in the face of what can only be a staggering loss -- speak out, educating others about the importance of prompt administration of epinephrine and advocating for awareness, understanding, education, better food labeling laws, research funding and more.  

Every single time I hear about a food allergy death, I think about how far we have come in education, advocacy and research...and am sobered by how much we have left to do.  

Ever since Susan's last anaphylactic reaction to her daily peanut dose, we have been meticulous in every step of her daily dose.  While at this point I do not believe Susan's adverse reactions to her "maintenance" doses (first to a Snicker's Bar and then to 8 and 1/2 Peanut M & M's) were because of something within our control, we are doing absolutely everything in our power to ensure that WE do not create a variable that might lead to an adverse anaphylaxis.

With news of Dylan Hill's death fresh in my mind from yesterday, I prepared the medications Susan takes before her peanut dose -- Zyrtec, Famotidine and Omeprazole -- all geared to support her body's effort to tolerate the dose -- and then her dose -- 1 single full-sized Reese's Peanut Butter Cup -- and a breakfast of scrambled eggs, muffins, mangos and milk (all foods she eats regularly) with care.  I presented breakfast-in-bed to Susan and a friend from soccer, who slept over...and then went about my day.

Susan and her friend enjoyed breakfast-in-bed and lounged around after, playing games on their iPads, talking, and relaxing.  It was a rare day with nothing more strenuous on the agenda than a shower...and Susan and her friend were both looking forward to the luxury of having nothing either of them had to do all day.

An hour and 45 minutes after her dose, Susan's sister Meg sounded the alarm -- Susan's face was red -- flushed.  I wasn't home, although my husband was.  While Susan assured us she felt fine, they quickly took pictures and sent them to me.  And then they informed me that Susan's chest, torso, back and stomach were also covered in hives.  More pictures.  

I looked at the pictures while talking to Susan.
Susan insisted she felt fine.
While I was listening to her words, I was listening more intently to how she sounded -- wondering if I heard an ever-so-slight wheeze...or if she was just the tiniest bit breathless...

As Susan insisted she was fine...
And I listened for what she herself might yet even be able to articulate in her voice...
One thing was clear.
I heard a note of panic in her voice...

(I am sure she was having the same possibilities unfurl in her mind...epinephrine...emergency call to doctor on-call for the clinical trial, possibly a trip to the emergency room, more epinephrine...and worst of all...the future of the clinical trial?  The very future of eating peanut.)

As I assured Susan that if she felt fine, it was likely to be nothing more than the skin changes we had identified, I tried to tell myself the same thing.
I knew it was important to tamp down that panic.
No exercise for two-hours post dose.
A racing, panicky heart would not, could not be good.

I reminded myself that we were nearly 2-hours post dose...knowing full well that that hadn't ever stopped Susan from having an anaphylactic reaction before.

As I debated whether or not to go home (recognizing that if her skin changes were the beginning of an anaphylactic reaction, I would never get there in time...knowing, also, that as much as I wanted to be the one there, Susan and her husband...could -- would have to -- handle this), I...
...wondered about the future.  
...thought about the risk (low, calculated, for an express purpose, with the belief that something better lies in front of her).
...took a minute to respect peanut, and the power it has to take my daughter from me.

I realized something I think I have known for a long time now, but have never really articulated.  
This (eating peanut thing) is always going to be hard.
This eating peanut poses a (significant) risk.
But hopefully, this "hard" is better than the other ways Susan's life has been "hard."
And hopefully, this daily "risk" is less than other, unknown, lurking, invisible "risks."

And I realized that while Susan has come tremendously far, what happened today -- a reaction, while (eversothankfully) mild -- underscores the need for more research, more clinical trials...and more funding...for the risk is still mind-bogglingly great.

I cannot help but feel that there was a reason Susan had a reaction to her peanut dose on the morning of the eve of her read-a-thon.   Her reaction -- as Susan and more than ten other readers are poised to raise awareness about food allergies by "reading for a reason" -- reminds us of the importance of raising awareness about the impact of food allergies and the importance of funding for additional food allergy research.

If you have ever cheered Susan on, celebrated her success or shed a tear while reading about her clinical trial journey -- if you are the parent of a child living with food allergies who hopes for a better (safer, different, easier) future or someone living with food allergies yourself...this is an incredible opportunity to thank our brave Susan for all that she has done in an effort to move food allergy treatment research forward.  

Please consider donating to Susan's read-a-thon today.

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