Photo by Rebecca Gould Photography

Thursday, June 12, 2014

Fighting Peanut

My third graders have had a totally awesome teacher for the last two years.  She recently taught them about idioms, and, since then, we have talked extensively about idioms and other forms of expression that don't always mean exactly what they sound like they might mean...

For example, my son gave his teacher a gift card to Starbucks.
He picked this gift solely for the idiom he wanted to use while delivering it -- I got you a cuppa Joe!

We've been talking about the idea of "fighting a cold," too.  My son especially likes this expression because while it does not mean exactly what it sounds like it means, he feels that there is some truth, some accuracy, to it.

Since Susan's updose to 45 mg of peanut protein on Monday, I have been turning that phrase over and over in my mind.  While I do not want her to view peanut as the enemy, I DO feel that she is -- in EVERY sense of the word -- "Fighting Peanut."

While Susan has not displayed any typical or truly significant signs of reaction to the peanut protein (until today, that is), all week I have felt as though her body has been fighting -- not a cold, but, peanut. 

Susan was inordinately tired on Monday night, the day of the updose.  And while I tried to rationalize her fatigue by thinking about the stress of the updose (imagine the emotional energy required to eat something you know has the power to kill you), I felt certain there was more to her fatigue than that.  I considered the energy required to spend a day one-on-one with a relatively new friend and discarded that, for while Susan and Lydia ARE new friends, Lydia's visit brought normalcy and joy to Susan -- not stress.

Susan has always been one to "hibernate" when her immune system is stressed.  She has been known to sleep for nearly twenty-four hours straight, waking only when pressed to drink or to go to the bathroom.  Sleep = escape and healing for Susan.  And so, as I watched over Susan on Monday night, I worried.  For, while I understand that extreme fatigue is not a typical symptom for a child undergoing oral immunotherapy (OIT), I also know my daughter.

Tuesday was a better day -- and, if I set aside the stress and uncertainty about whether or not Susan would updose on Wednesday, it was all good.  Since we were planning for a mid-day updose, my husband prepared a tropical smoothie with her peanut dose in it for Susan after she finished skating on Tuesday morning.  She drank it in the car on the way home and hung out with me during her observation period.  We observed some changes in her skin, with a mild increase in her rashy hives, but, otherwise, she felt okay.  Susan was still tired on Tuesday, but, not in that alarmingly depleted way she was on Monday.  (Well, not really...)

While I did not know it at the time, on Wednesday morning, both of the skating coaches who worked with Susan noted that her cheeks were exceptionally flushed.  In hindsight, I wish I had known, but, honestly, I doubt it would have changed anything.

Susan skated (as usual) on Wednesday afternoon, although she only took one lesson (whereas she often takes two).  When I picked her up at the rink at 5:20 pm, she was relieved to hear that Goalie practice had been cancelled due to wet fields, which was the first sign that something really was NOT right.  Susan LOVES Goalie practice. 

We headed home, and, while en route, she requested "Breakfast for Dinner" (a favorite in our house) and then declared that she was going to go to bed after dinner.  That gave me pause.

That little voice in my head that talks to me was going full force.
As it yammered at me, I tried to quell my fear.
But, deep down, if I was honest, I felt that something was wrong.

I tried to tell myself that this was Susan's body's natural reaction to the introduction of peanut.  I likened her reaction to the idea of fighting a cold -- Susan's body was fighting the peanut.

And yet, while the hope, when someone is "fighting a cold" is that they do not get sick, in Susan's case, I want (and need) her body to acquiesce, to give in, to accept and allow the peanut.  To embrace it.  Can her body do this?  Will it?

Susan was asleep before 7:00 pm on Wednesday night.  I knew she was tired, because she slept through her twin siblings' rowdy bedtime routine even though it mostly occurred right outside her bedroom door.

While I was glad that Susan was sleeping, that she was doing what she does best by listening to her body and taking care of herself, I was also deeply concerned.  

The concern hung on as I laid on the trundle bed next to Susan.  She was restless in a way that is new -- tossing, turning...and talking, although I could not understand any of what she said.

Susan got an early start on Thursday morning.  She was scheduled to compete on Thursday afternoon, and she wanted to take advantage of what was likely to be relatively empty practice ice on Thursday morning.  The day was carefully planned.  Susan did not want to miss any of the day-before-the-last-day of school...and yet, we needed to fit her peanut dose in at least two hours before she would compete.  With a 4:30 pm start time for her event, we decided that she should take her peanut dose as soon as I picked her up at school at 12:55 pm.  I liked the cushion we built in.

With all three of my kids at school, I was busy doing end-of-the-school year things, like teacher appreciation gifts and baking (gluten free, peanut free, tree nut free, soy free, egg free) classroom treats (brownies and cookies -- all gobbled up -- you'd never know they were free of so many things!).

And then, at about 9:35 am, my phone rang.
My heart stopped.
Or maybe it just skipped a very long beat.

It was the number for Northwood.
Even before I answered, I knew something was...not right.  (Wrong?  I so, so hoped not.)

So, I was not surprised to hear the nurse's voice on the other end...
She explained that Susan was in her office because she had become nauseous in gym class.
She told me Susan was feeling better.

We talked -- and while we were talking, she studied Susan and checked her skin.
Then I talked to Susan, who assured me she felt "fine."
(Yes, right, that's why you are in the nurse's office.)

I pressed Susan for details, and she explained that the nauseous feeling had been fleeting -- like when she was doing the food challenges.  I think she meant that to be reassuring to me, but it...wasn't. 

Susan again assured me that she was "fine."
I was scared as I struggled to tease apart the many possible layers. 
-- Was she really and truly fine? 
-- Or did she simply WANT to be fine?
-- Was she trying to ensure she would be able to compete later in the afternoon?

And then she admitted that she had been scared when it happened.
And I offered to pick her up at school, which she vehemently refused.
And then I suggested that I just go see her (at school) -- something else she DID NOT want to have happen.

I heard Susan, and I wrestled with wanting to respect her wishes and wanting to ensure that she was safe and well.  I talked to the nurse again, and we made a plan:

-- The nurse would accompany Susan to her beloved Accelerated English class and talk with Susan's teacher about what had been going on.
-- Susan promised to return to the nurse's office if ANYTHING changed.
-- I would call the clinical trial coordinator and report what was going on to her.
-- I would report back to the nurse after speaking with the clinical trial coordinator.

As out-of-control as the whole thing felt, having a real plan DID make me feel better.  (There's that Type A personality...)

Envisioning Susan returning to class trailed by the nurse (I was so thankful that she "got" that Susan did not want to return to class with her in tow...), I paged the clinical trial coordinator, who called me back almost immediately. 

In the minute or so that I waited, I wondered -- does she recognize my number?  What did she think when she saw it pop up on her pager?  I suspect she was surprised to be hearing from me...

The clinical trial coordinator and I talked.  She gathered information.  I tried to provide as many pertinent details as possible -- and (while I KNOW it is not a typical symptom in an allergic reaction, I stressed Susan's fatigue...and I was clear that I did not think she was fighting something else -- because, well, as much as I would LIKE to think that, I don't).

The clinical trial coordinator told me she wanted to talk to the Principal Investigator, the doctor in charge of the clinical trial.  I was not surprised to receive a call back from the doctor, who wanted to gather some more information.  Even though I knew the doctor was running clinic (and therefore, no doubt exceptionally busy), she talked to me for a long time.  In the end, we decided to stay the course.

Susan would take her home dose of 45 mg of peanut around 1:00 pm (or shortly thereafter).  She would take her Famotidine 30 minutes before.  And...we would...hope for the best.

As the morning wore on, and I attended my twins' classroom party, thoughts of Susan were forefront in my mind.  I wished I had gone to see her...and yet, as I reminded myself a thousand times -- I am determined in my commitment to allow her to make choices where possible (that is MOST CERTAINLY my social worker hat...give control wherever and whenever possible).

The plan had been for me to arrive at Northwood with Susan's peanut-filled smoothie in hand.  However, given that she had been feeling nauseated, I decided to ask Susan what kind of smoothie she wanted her peanut protein dose in (she had asked for her usual "tropical" smoothie early in the morning, but, I wanted to be sure that still sounded good to her).  Despite Susan's assurances to the contrary, I could tell that she was not feeling perfect when I picked her up.

I am sure my questions pushed her nearly to the edge, for she is private in so many ways.  But, there were things I needed to know -- how did she feel after she left the nurse's office?  How was lunch?  (And this time, I was SO NOT asking about who sat with her...)  Susan assured me she was fine, but, as we talked about the peanut dose, I could tell that she was...not quite perfect.  And, when she asked for a "smaller" smoothie, with less fruit, I was even more certain.

Trying to prepare a smoothie that would hide the floury peanut protein while not pushing Susan's ability to consume it, I went very light on the fruit...and added as much milk as possible, hoping that if the smoothie was thinner than usual, it would be easier for Susan.  By about 1:15 pm, Susan had the peanut-dose filled smoothie in her hand.  The color-changing straw Meg picked out for Susan pleased her (it is the little things) as she set about sipping down her dose.

Sipping more slowly than usual, Susan repeatedly reassured me that she was "fine," but, I wasn't convinced.  And then, with about an inch of smoothie remaining in the cup, Susan gagged.  She was almost as surprised as I was.  Eyeing the remaining smoothie warily, she assured me she could finish it -- and then, as certainly as she said she could finish it, it became clear she would not be able to. 

As quickly as it began, it was over.  Susan vomited violently, again and again.  I held her hair out of the way and rubbed her back.  (When it was all over, I realized I had done vomit in a way I never have before.)  Even when there was nothing left, she heaved again and again...and again.  Tears in her eyes, she looked at me...imploringly.  It's the peanut, I said.  She nodded, teary-eyed. 

To make it this far (45 mg) and yet...not.

Realizing I would not be able to pick Susan's twin siblings up at school, I called a friend.  The words rushed out -- "Susan is not well."  With no discussion, and no questions asked, I immediately had my friend's assurance that she would pick them up at school and drop them off at our house.  I feel so fortunate to have a community of good friends.

As the initial crisis passed, I realized I was shaking.  Without thinking about what the proper protocol was, I paged the Principal Investigator -- the doctor with whom I had spoken earlier.  She called me back immediately, and as I explained what had happened, I began to clarify in my own mind -- this was NOT some sort of stomach bug, as Susan had eaten her lunch without issue between being in the nurse's office and taking the peanut dose. 

The doctor gathered information.  She asked about other symptoms of a reaction.  Susan reported that her throat felt like something was "stuck" in it.  Worried that the reaction was progressing, I offered her water, which seemed to help.  The doctor stayed on the phone with me for a long time, asking me to check Susan's skin, assess whether or not she was less flush, less teary -- better...or worse? 

While we were still on the phone, Susan asked if she could eat something -- staggeringly, she was hungry.  She had a package of giant gold fish graham cracker cookies and then a banana.  The motivation behind the snack became clear when she asked me to ask the doctor if she could still compete.

I was -- stunned.
And yet, not -- because that's just how Susan is.

The doctor and I discussed the idea of Susan competing at length.  We talked about how long it had been since her dose, how much physical exertion would be required, and whether or not Susan could chose NOT to compete at the last minute.  Because I knew, if Susan was going to be able to compete, we needed to get on the road (oh, please, please I was thinking -- no vomit in my new car!), I suggested we go to the competition, but that we delay a final decision until more time had passed.  The doctor proposed that she call me back in an hour -- I liked that idea. 

I texted Susan's skating coach an update.  We gathered everything Susan would need to complete...and when Susan's sister and brother arrived home, I briefly explained the situation and we headed for the competition.  I kept checking with Susan to be sure she was the point that she eventually said, "Mom, I'll TELL you if something changes."  OK.  I want so badly to respect Susan's wishes in this all -- but, sometimes, it is just so hard.  At every light, I snuck a peek in the rearview mirror.  I wish I could say she didn't see me, but, my eyes met hers -- more often than not.

All the way to the competition, I wondered -- was it right to allow Susan to decide whether or not to compete?  As her mother, should I simply tell her she could not?  While there is so much that we hope Susan will gain as the result of this clinical trial, right now, as the summer begins, the list of losses far outweighs the list of things that might be gained.

The Principal Investigator called me back exactly an hour later.  We talked some more. We reviewed the length of the warm-up ice session (four minutes), and the length of Susan's program, 2 minutes and 15 seconds.  In what felt like an educated guess (for Susan's allergy has never been predictable), the doctor and I decided that there was unlikely to be a significant physical risk.  

And so...I proposed that Susan be allowed to choose whether or not to compete.  Susan has always listened to her body well, and I trusted her to do so.  She was clear -- she wanted to compete.

That voice yammered at me some more when Susan's skating coach questioned my decision to allow her to compete.  And yet, as I explained myself, I confirmed in my own mind the decision to give Susan the choice, the power -- to allow Susan to decide whether or not to compete, and to ensure that she knew she could (at any point) change her mind...scratching even after she had taken the ice to compete.  

Upon arriving at the rink, Susan conserved energy.  She was efficient during warm-up ice and got off about thirty seconds early -- as soon as she had done all she needed to do.  And then, skating third in a competitive grouping of six, it was Susan's turn to skate.  It wasn't her best-ever skate, but she landed all of her jumps (including a number of relatively new doubles)...a few stumbles aside (which I attributed to what I was certain had to be a lingering after-vomiting shakiness).  

Susan was third, a disappointment to her, for she knew she could have won the event...but, in my mind, she will always be a champion...this particular skate just affirms it.

Photo courtesy of Kevin Phelan, of KrPhotogs Photograph, LLC

No comments:

Post a Comment