Photo by Rebecca Gould Photography

Tuesday, September 16, 2014

A Peanut + Retail Therapy

The day after Susan's second rapid desensitization to peanut we returned to the Clinical Research Unit (CRU) to confirm that she could tolerate a single dose of 250 mg of peanut protein.  As we drove into the city, I marveled at the fact that she had tolerated 460.5 mg of peanut cumulatively without any issue.


Even though I laid awake in the trundle bed in Susan's room much of the night -- turning the wonder of it all over in my head while also checking repeatedly to be sure she was still fine -- the reality still had not really sunk in.

As we drove into the city, I turned the idea of 250 mg of peanut over and over in my mind.  It was incredible.  And SCARY. held such incredible hope for the future -- my mind tumbled over the ways in which our life could change -- new restaurants, movies in theaters, flights...but more than anything -- maybe, just maybe -- less worry. 

A paradigm shift.
Less worry.
Less risk.
A freer life.
A more secure life.

I knew we were far, far from this...but it was starting to seem like we might get there.

I wondered -- a thought I had not had before -- would I be able to trust peanut?  Would I ever let my guard down?  Could I?  Would I ever really feel like Susan could live a freer life?  I was not sure.  I am not sure.

Feeling oddly confident about Susan's ability to tolerate a single 250 mg dose of peanut protein, we walked into the Clinical Research Unit together.  Susan was wearing all the same clothing she had worn the previous day -- I think she may wear those PB & J PJ pants and peanuty socks to every updose appointment we have...and if they make her feel good...if they make her feel more confident, I want her to wear them.

Having abandoned the idea of shopping the previous day, Susan had some big plans for our time together after we were released from the CRU.  While we had promised her school that she would attend in the afternoons after updoses whenever possible, I was not quite ready to let her out of my sight.  I was not sure how I felt about all the peanut she had eaten, and I was really not prepared to let her be anywhere other than with me.  Sensing this (and maybe wanting her own assurance that we would be together in the afternoon, Susan outlined her plan on the way into the city.) 

In the car, en route to Lurie Children's Hospital, Susan proposed we go to lunch at M. Henry.  While I LOVE it there, I would say what she loves about M. Henry is their breakfast potatoes.  While she is a kid who loves eggs, she had not yet ordered something there that she truly loved.  I saw right through her -- propose a place Mom loves and Mom is more likely to agree.  What she did not know was that she could have asked for the moon and I would have done my very best to pull it down for her...

Susan's 250 mg dose of peanut (blended with chocolate Tera's Whey powder and a banana) went perfectly.  And while there was a huge part of me that wondered how that could possibly be so, the logical, pragmatic part of me expected it to be fine (So why couldn't I quiet that panicked voice inside my head?) -- if a dose of 250 mg of peanut on top of numerous other doses had been fine a day earlier, so too should a single, free-standing dose be fine...

(Except it scared me.)
It still scares me.
Will it always scare me?

Two hours after Susan took her 250 mg dose of peanut (that's the equivalent of one entire peanut -- something that I know could have killed her once) -- we were released from the CRU.  While on the one hand, I was excited, on the other, I wondered...thinking about Susan's history of delayed reactions...and a part of me -- a very BIG part of me...wanted to ask to stay.

And yet, Susan was (clearly) ready to go.
And I did NOT want my fear to spill over on to her.

As we walked out of the hospital, I double-checked her restaurant choice.
M. Henry's it was.

We drove there in relative silence.
I don't know what Susan was thinking -- but, I was wondering -- was it a mistake to go there?  Some sort of test of karma?  After all, the last time we had been there, Susan had had a delayed reaction to the dose we thought would become her initial home dose that resulted in her vomiting on the sidewalk...(More Questions than Answers)

What was I thinking?
(Forward, onward...and above all, DO NOT LET SUSAN SEE MY FEAR.)

I held my breath as we walked by the spot on the sidewalk where Susan vomited.
She barely glanced down.
(I was struck by her confidence in me, the doctors and nurses, in the clinical trial as I fervently wished that she would not be let down...)

Safely inside M. Henry, and after some discussion, Susan ordered regular scrambled eggs with extra breakfast potatoes. 

Susan placed her order, concluding with:  "I have a severe peanut allergy.  I am also allergic to tree nuts and soy.  Please be sure the chef knows that my food cannot be cross-contaminated with peanut."

We exchanged a look.
Susan was perfectly right to place her order as she did -- we have agreed not to change anything in the management of Susan's food allergies during the course of the clinical trial...and yet, it was so strange to know that she had, in fact, just eaten the equivalent of a peanut... 

We chatted while we waited for our meal...
All the while, I was turning the idea of a single peanut over in the back of my mind...
I tried to nonchalantly scrutinize Susan, but I am pretty sure she saw through me.
(Will I ever trust peanut?)

Breakfast-for-lunch was great...
(Susan knows me well, and went for the "extra" potatoes first!)

I caught Susan's lingering glance on the dessert case on the way out the door of M. Henry.  We looked at each other.  I burst out -- "somedaySusanyoucaneatanythinginthere!"  Maybe.  Just maybe.  And wouldn't that be...incredible?

I know she thought it was goofy that I pressed her to stand in front of the dessert case, but, some day -- the day she walks in there and orders whatever dessert looks good to her -- I want to be able to show her this picture -- a snapshot in time of the land between anaphylactic to peanut (even cross-contamination) and...?

While our meal was awesome, the highlight was the shopping.  Susan had gathered up her gift cards -- Ivivva, Abercrombie & Fitch, Nordstrom's and Barnes & Noble and had some VERY definite ideas about where to go first -- Ivivva!  She received some of their clothing for her birthday, and has decided it is awesome for skating. 

Upon entering their temporary location, we struck up a conversation with the very friendly staff at Ivivva, who were curious about why Susan was shopping in the middle of the day.  (They might well have wondered about her PJ pants, too -- but, they were too polite to inquire!)  We explained briefly about the clinical trial and then talked in much greater detail about it in answer to their many questions.  We shopped as we talked, and before I knew it, Susan had picked out several great pieces -- for herself and her sister...and then -- as we were getting ready to leave, Serafina invited Susan to do a "community fitting" -- a session in which Susan would have an opportunity to try on current Ivivva merchandise while skating -- with the hope that I would allow her to be photographed and that she would provide helpful feedback.  We set a date and I found myself feeling thankful that Susan was going to have such a fun and interesting opportunity...

Susan rapidly made her way from Ivivva to Abercrombie, where she purchased denim, a darling sweater and advocated that I buy a sweatshirt for her sister's birthday (shopping with Susan was more costly than I had anticipated -- as she was busy looking out for her sister and brother everywhere we went!)...and then to Nordstrom's, where the Uggs she'd had her eye on broke her bank (I was feeling grateful to the universe, which had the trickle-down effect of making me feel generous, so I took care of the Uggs)  As we were leaving, an awesome "laser lemon" shirt caught her eye for her brother.  Tired, she decided to skip Barnes & Noble...after shyly agreeing to let me take this post-shopping spree photo!

The ideal of "retail therapy" has never really appealed to me, but I will admit that I enjoyed myself...maybe even relaxed a little...although I never stopped thinking about Peanut.

1 comment:

  1. Thank you for Sharing Susan ' s success. Congratulations! Bigger congratulations to you for controlling your fear and creating the path for success.