Photo by Rebecca Gould Photography

Thursday, June 19, 2014

Losing the "Peanut Fight"

I could try to put a happy face on...
I could list all of the possible great outcomes of the clinical trial -- for Susan, for others living with food allergies, for the medical community...

But, that wouldn't be very honest of me.
Right now, while I COULD do all of those things, I don't really want to.

Today (and honestly, a number of days leading up to today) has been ever so hard.

After Susan tolerated the (dreaded) 60 mg dose on Tuesday and then on Wednesday (despite her nausea), I think we both felt she was "in the clear."  (Whatever THAT means.)  The head-game the 60 mg dose could have become was behind us.  I found myself thinking that the nausea last week and yesterday were...(maybe, hopefully?) flukes.

But, honestly, deep down -- while I wanted to think that, I didn't really, truly believe it. 

(Sneaky, sneaky peanut.)

While we have always known Susan's peanut allergy is atypically severe, we occasionally fall into the trap of...getting almost comfortable with the way things are.  (I say almost, for I was still sleeping with her and never, not ever leaving her alone...and how "normal" is that with a mature, otherwise typical preteen?)

I was hanging out at the rink while Susan skated on Thursday morning.  I was trying to find a balance between sitting IN the rink and actually watching her and giving her just enough space that she would not feel like I was watching her every move.  I finally talked with Susan about my dilemma and asked her what she wanted me to do.

She was clear:
-- Don't leave.
-- But don't hover.
-- "Oh...and you don't need to sit and watch me, either." 
    (In the skating community, parents are encouraged, to get out of the way -- skaters who are serious about their sport will make good use of their practice time without a parent hovering over their every move.)

We agreed that I would sit "somewhere" in the lobby.
Susan allowed that I could sit wherever I wanted.

I found a corner near an outlet, plugged my computer in and worked on a blog entry.
A friend came with her darling daughter (Susan's tiniest admirer, Amelia) and we chatted.
We were watching Amelia on a different ice surface when Susan tapped me on the shoulder.

I turned -- struck both by her height next to me and by her tearstained face.
She didn't have to tell me...for I knew.
She had vomited (again).
I hugged her.
I didn't know what else to do.

My friend bought her a drink from the vending machine.
We sat down.
We talked about what had happened.

Susan was feeling better, so, she snacked on a cereal bar and drank some juice.
This -- as much as anything -- confirmed for me that the vomiting is not some errant, ever-hanging-on stomach bug...but somehow, peanut related.

I did not know what to do.
Actually, I *KNEW* what to do, but, I did not know what would happen next -- after I made the call I knew I had to make to the clinical trial coordinator.  I could not imagine what she would say, what the remedy would be...

Feeling better, Susan got back on the ice.
More confirmation.

I paged the clinical trial coordinator.
She called me back right away.
(Really, even though I was impatient yesterday, she does reliably call me back right away.)
I detected a wary concern in her voice (not in a bad way -- I felt what I heard in her voice echoed exactly how I was feeling -- which in an odd way made me feel both better and worse at the same time).

She listened carefully.
Asked questions.
I pictured her taking notes.
And then, she formulated a "for now" plan.

HOLD the peanut dose.
Well...until I call you...until we know more of what we are doing.

Susan was relieved when I told her we were going to "hold" the dose.  I don't think she ever articulated it well, but, I think the 60 mg peanut dose made her feel unwell in a pervasive, whole-body kind of way that was far outside the margins of the symptoms the clinical trial coordinator and doctors assessed for.

So then, we waited.
And Susan skated.
And took an off-ice class.
And snacked on the theory that her stomach might be more cooperative if it had something in it at all times.

And then we picked up Susan's littlest friend, Amelia, and drove her home from her skating/gymnastics camp and...just as we were pulling into Amelia's driveway, Susan had a very odd burp.  The same kind of burp that had preceded every other vomit episode.

I heard it, and I saw the look on her face...
(as did Amelia's mother)
And the moment passed.
The girls sat down to hang out -- to relax and watch a movie together.
Quiet, restful time...

Until Susan burped again...and then vomited.
Violently, repeatedly -- until all that was left were dry heaves -- again, and again and again.
When she was done -- shaky, white, and sweaty, she said, "it is like something is trying to get out of me."


I paged the clinical trial coordinator again.
She called me back right away.
In an apologetic rush, she explained that she had not called me back because she was waiting for a final plan.  She explained that they had requested permission from the Site Director to move Susan to the Open Label Xolair arm of the study...

I felt immense relief as I interrupted her to explain that while that all sounded incredible, I was actually calling because Susan had vomited -- again.

She was quiet.
I was quiet while I listened to her think.
She gathered her thoughts and said with authority that Susan should not take her 60 mg dose that day.

I felt relief.
A (temporary) reprieve from this fight with peanut.

The sympathy she felt for Susan was evident, and I was thankful once again to be traveling this journey with such a compassionate group of people (medical professionals) who really do see Susan as a person.

We agreed that we would talk in the morning.

Susan and I agreed that she would not skate again that day.
Susan snacked on crackers.  We talked about a baked potato for dinner.
More confirmation.

I set about cancelling Susan's spin lesson with her new instructor.
I prepared to send a text message to her moves instructor.

We gathered ourselves and left Amelia's.
In the car, in a tiny voice, Susan asked, "What if I do want to skate this afternoon?"

As I was pretty certain that with less than an hour's notice I had paid for at least one of the lessons regardless of whether or not she took it (if not both), I told her that as far as I was concerned, we could go to the rink and she could decide at any point whether or not she wanted to take her lessons -- before or during.

We stopped for a Sprite.
It had nearly the power of a Slurpee.  (OK, we're partial to Freeze's, but, we call them Slurpees...)

While Susan was putting on her skates, I snuck into the Pro Shop.
I had an idea -- she needed a new pair of gloves, and I was pretty sure I had the perfect pair in mind...

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