Photo by Rebecca Gould Photography

Wednesday, April 15, 2015

That Lovely Resiliency

This morning, I woke to a comment from a woman I have never met, Gail Reynolds Frank, but whom I have come to respect tremendously over the past year.  Her  12 1/2 year old daughter was diagnosed with a peanut allergy at the age of ten.  They, too, are seeking to reduce the risks their daughter faces daily through oral immunotherapy.  

She quoted me:  
While I wish it weren't so for the countless children who live in fear not of the allergen they eat but of the allergen they cannot see -- the invisible danger that lurks on doorknobs, seat cushions, tables and desks...any public space -- the number of children walking this path of fear grows daily.

...and concluded, "And that's why we do OIT:  for the ability to live more normally and participate in life.  We never lose the fear of a reaction but we gain what non-allergic people take for granted."

In the light of day, pushing forward didn't feel quite so...insane.  
I decided to go with my dear friend Phyllis Sommer's word:  COURAGE.

We eased into our morning...
-- with a jump lesson on the harness (which I recorded for the physical therapists and pediatric neurosurgeon)
-- and then a drive downtown to Ann & Robert H. Lurie Children's Hospital...
-- where we saw Susan's pediatric neurosurgeon (who cleared her completely!)
-- before we continued upward to the Clinical Research Unit (CRU) on the 19th floor...

I had plenty of time to live with the conversation in my head.

I reminded myself again and again that Susan is courageous, and that this journey of hers is just that -- a journey with a very clear goal, but uncharted territory between here and there -- that's what a clinical trial is, after all...

I decided to believe that Susan would be able to tolerate her 8 1/2 Peanut M & M's.  I had a beautiful half and eight very normal-sized Peanut M & M's (I had rejected any that looked big, or misshapen in any way...).

Since several hours had elapsed between Susan's breakfast and her peanut dose, after her appointment with the pediatric neurosurgeon, we stopped off in the cafeteria to buy some yogurt -- I joked that we needed to create a "soft landing pad" for the peanut.  Susan liked the idea...picking a tried-and-true yogurt.

The nurses examined Susan and we all marveled at the fact that Susan has (finally) gotten very adept at the lung function tests they administer before each peanut dose (she used to really struggle, and I always felt that it had nothing to do with her lung function and everything to do with her needing to have more practice doing those types of tests).
She has become well-practiced at things I would never have imagined...

They took her temperature, and measured her pulse-oxygenation.
We peered at her skin and asked her in countless different ways how she was.

She was insistent that she was...fine.

The doctor examined her -- and then gave Susan the go-ahead.  She ate her Peanut M & M's quickly...sandwiching the half between the first four and the last four (humor, folks).  I wanted to take a picture of her eating them, but she finished before I could -- giving me a goofy look while she held on to the empty bag.

After Susan finished eating her 8 1/2 Peanut M & M's, I sent a text message to a small group of friends and family who like to be really, really in the loop.  

At 9:50 am I shared, "Susan just took her 2000 mg dose of we sit."

My dear friend, Phyllis Sommer, who traveled an incredibly difficult journey with her son Sam -- who eventually lost his valiant fight against leukemia in late 2013 -- added, "and breathe."

I responded, "Yes, breathe too.  She's incredibly relaxed about the whole thing.  I'm trying not to show my nervous."  (I'm pretty sure my nerves got in the way, as I meant "nervousness."

Phyllis sent me a private text message (which I have permission to share):  "She's not scared because not matter how mature and wonderful and wise she is, she's a kid.  And so she has that lovely resiliency and forgetfulness and faith and trust of a kid."

I've pondered that all day long.
And, I have decided Phyllis is right...

   and so, I have found myself wondering -- 

if Phyllis' insight is accurate (and I believe it is)...

what must we -- as Susan's parents -- consider about her decision-making, her desire to see the clinical trial through?  Should we view her position through the lens of a child who, no matter how mature she is, has the forgetfulness and faith and trust of a kid?

Might there come a time when we -- as her parents -- have to (or should?) weigh in more heavily than we have?  For thus far, we have supported Susan's clear-minded determination to see the clinical through -- to get to a safe place, to eat peanut -- no matter how scary the journey might be.

To be clear, if we felt the risk was too great, we would step in.

In case we did not understand it at the outset of the clinical trial, we absolutely understand the importance of early administration of epinephrine at this point, and we will administer it again and again if need be (although I desperately hope that is not the case).

To be clear, if we felt the risk was too great, we would step in.

And yet, I have been aware all afternoon that we have allowed Susan's vision to lead us, to guide us, to...almost eliminate the need to revisit our original decision to enroll Susan in the clinical trial.
It is something to think about.
  (to really, really think about...)

  and so it will sit there in the back of my mind...and I will poke and prod at it...and some early morning, when it is just me and Susan in the car...on the way to the rink before most people are awake, I'll check in with her...for in the quiet of the pre-dawn hours, sometimes -- just sometimes -- it is easier to talk about these kinds of things.

And yet, for today, I have decided to simply embrace the fact that an hour after Susan took her 2000 mg dose of peanut protein in the form of 8 1/2 Peanut M & M's, we were released from the CRU...

And hour later, she walked happily into school, pleased to be arriving just before lunch...

As the day wore on, more and more people checked in with me to see how the dose had gone.  Eventually, more than twelve hours after Susan took her dose, I started to relax...for it seemed that she had tolerated it without issue...

I do not know if I will ever breath Susan's history of delayed anaphylaxis leaves me unsteady, uncertain...unclear about what to expect.

I think I am starting to understand that our new reality (while hopefully safer than our old reality), will still be uncertain...unpredictable...and always requiring that epinephrine be nearby.

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