Photo by Rebecca Gould Photography

Wednesday, June 18, 2014

TRYING to Eat Peanut

Tuesday night passed uneventfully into Wednesday morning.
As the 24-hour post-dose mark approached, I began to feel more comfortable. 

Surely, if Susan was going to have a reaction, she would have by that point.
At her request, and knowing that her skating coach and a number of other people who know her well would be around, we left her alone at the rink for a series of on- and off-ice summer skating classes.

A friend issued an impromptu lunch invitation.
I accepted.

I was looking forward to a break from my non-stop time with Susan as much (I am sure) as she was looking forward to a break from me.  While I adore her, and I treasure my time with her, she is a child who needs her space...and as a parent, I know I benefit from company of adults in addition to the company of my children.

I squeezed a few quick errands in, a storm hit and before I knew it, I was running late for lunch.  I texted my understanding friend and she assured me I should not worry.

I appreciated her understanding and patience.
I was SO looking forward to lunch with an adult friend.

And then, a mere minute or two after I walked into the restaurant, my phone rang.
It was Susan, calling me.
Susan doesn't call me -- not out of the blue, and most certainly not when she is supposed to be in a skating class...

My heart stopped.
Literally.  I am sure of it.
I showed my friend that it was Susan calling and quickly answered.

She was crying, and I had a hard time understanding what she was saying at first.
I felt a mixture of alarm and relief wash through me -- if she was calling me, talking to me herself, she must be okay...but, she was crying, and I was having trouble understanding why.

I heard her say something about vomit, and as I hastily gathered my things, I said something (I no longer remember what) to my friend and hurried out of the restaurant.  In good traffic, I could be at the rink in 15 minutes, but, it was storming...and there were some areas that had lost power... and I needed gas...and I knew that no matter how quickly I got there, it was going to feel like it took way, way too long.)

And even though I did not really understand what had happened,
I DID know that I was regretting having left Susan at the rink -- alone.
(Okay.  She had not really been alone, but I was feeling like she had been alone, for I had not been there.)

I was in the car, driving (OK, I'll admit it, I was speeding) toward the rink (while using the nifty hands-free function in my new car) before I fully understood what had happened:

At about 11:15, Susan had a sudden wave of nausea.
Because she had not eaten anything since breakfast (very early -- that is the definition of a competitive skater's life), her stomach was empty, so, she had what were essentially dry heaves.  
The feeling passed as quickly as it came on, but, it scared Susan -- for it was like Thursday, but...worse.

I so got it.
I was scared, too.

That near-miss mix of adrenaline and relief flooded my body.
She was OK.
For now.
But what next?

We had planned for her to take her peanut dose at 12:30 pm.  How would she ever be able to do that?  Could she even take her 60 mg dose of peanut protein?  WOULD she tolerate it?  Or was this some unrelated, random nausea?  I *SO* doubted that, but, I tried to entertain every possibility.

Knowing there were no easy answers, I paged the clinical trial coordinator and when she did not call me back in about two minutes (yes, I knew -- even at the time -- that I was not being patient enough, but, I was SCARED, and I wanted to talk to someone right away), I called the Clinical Research Unit (CRU) directly and was relieved to learn that the clinical trial coordinator was there.  They transferred her to me right away.

As I hurtled down the highway, I *think* I apologized for tracking her down like a mad woman (I hope!) and launched into an explanation of what had happened.  She placed my call on the speaker phone, as Dr. R. was in the office with her, and she thought we should all talk about what had happened so that we could "make a plan."

I liked the idea of making a plan, but, I could not imagine what that plan might be.  I was feeling slightly unhinged, but, trying to stay calm. 

[IF Susan's peanut dose from the previous day had caused this nausea (and even though I *SO* did not want to believe it had, in my heart of hearts, I believed it was)...this changed everything.  This was a reaction nearly 24-hours post dose.  I could hardly wrap my head around the implications.  And, even now, I am not sure I have...]

And then...while I was wondering what type of "plan" could possibly help, Dr. R. proposed that we go into the CRU for Susan's 60 mg dose of peanut protein.  Relief washed over me.  Can I say that again?  Relief WASHED OVER ME.  It was such a GOOD idea.  I liked that plan.  And I was pretty sure Susan would like it, too.

While the clinical trial has clearly become difficult in a way I do not think we could possibly have anticipated, I continue to marvel at the tremendous support the doctors and clinical trial coordinators provide. 

With the plan in place (pending, of course, Susan's buy-in), there were a few logistical issues to resolve:
-- I did not have Susan's peanut protein with me
-- I did not have our bullet blender or chocolate whey powder with me
(-- I did not have anything special we could use to pass our time in the CRU)

Dr. R. and the clinical trial coordinator assured me that their pharmacy could provide Susan's 60 mg peanut dose (I would just need to figure out an acceptable "vehicle" for delivery). 

As I was finalizing the details of our plan with Dr. R. and the clinical trial coordinator, I arrived at the rink (NONE too soon).  Susan was waiting for me.  As I outlined the plan, I saw relief on her face. 

Seeing the relief on her face made me feel better.
Eleven-nearly-twelve is such a difficult time.
The challenges of this clinical trial have, I am sure, exacerbated it.
Control is SO important.
Finding oneself is CRUCIAL.  Critical.
Balance (for me, as Susan's parent) is imperative.
It takes all of everything that I have to find something (balance?) that I hope is working for her.
[But really, will I EVER know for sure?  I try to give Susan the opportunity to make decisions (read:  power) whenever possible.  But, is it enough?  There is no manual for this, that is for sure...]

En route to Lurie Children's Hospital, Susan and I brainstormed acceptable options for her peanut dose.  She was deeply disappointed that I did not have the bullet blender and chocolate whey powder (we use Tera's Whey) with me...and I vowed that, in this time of uncertainty, I would always carry it with me from now on...

After much discussion, we settled on mixing the dose into a chocolate milkshake from McDonald's.  While I was certain that I had seen a McDonald's or two between the highway and the hospital, as irregular (at best) customers of McDonald's, I could not picture exactly where one was.  I had Susan send a text message to the friend I had stood up at lunch (if you arrive and then fly out the door, have you really stood your friend up?) -- who has spent far more than her fair share of time at Lurie Children's Hospital.  She quickly replied with multiple options, including some ideas for me (I had missed breakfast and had been counting on our lunch together!).

Susan and I drove through that funky old-fashioned McDonald's on Ohio in downtown Chicago and purchased a chocolate milkshake.  Susan was in a mood.  I wasn't sure what of the many possible options to attribute it to:  not feeling well, being tired, the stress and uncertainty of it all, being nearly 12?  Who knew?  Most certainly not me.

While we waited in the drive-through line, I texted my friend the pedicurist with an update.  I was not at all certain we would make a 5:00 pm pedicure.  I did not know whether or not I should cancel.  My friend kindly assured me Susan was her last appointment of the day...and said she wanted me to keep her updated as the afternoon wore on.  Friends like these ROCK.  (Thank you, Andi!)

Susan requested (and received) permission from me to drink some of the milkshake (I knew we would need space for the peanut powder protein)...and oddly, by the time we had arrived at the CRU, the milkshake was deflated...flat...and...unlike any milkshake I had ever seen.  (Sorry, McDonald's.)

As it was not a "real" clinic visit, the protocol was different than usual.  The clinical trial coordinator weighed and measured Susan and also had her do the two breathing tests she regularly does before each updose.  It was business as usual, even though we had been there as recently as the previous day...

Strongly doubting whether or not it was made of real food, I mixed Susan's 60 mg dose of peanut protein into her deflated chocolate milkshake.  Knowing she had to drink every last sip of it, I spared her the disparaging commentary I might otherwise have made...(nothing against McDonald's here, I promise...I was just disappointed in what happened to the milkshake over time.  Simple fix:  Don't try this at home.  If you buy a McDonald's milkshake, enjoy it promptly.)

Composed as ever, despite the events earlier in the day, Susan drank her deflated, peanut-laden (contaminated?  filled?) milkshake down -- calmly.

While I have become inured to the blood pressure cuff and pulse ox monitor, this picture of Susan is a good reminder of the seriousness of the journey she (we) has (have) embarked upon.

Once again, I allowed Susan to lose herself in a world of her own making -- this time Minecraft.  While I do not believe in unlimited gaming or movie watching, I DO believe that it is important to allow children undergoing difficult or stressful medical procedures to cope as works best for them.  In Susan's case, finding her own private place to "hang out" seems like the key...

The minutes ticked by...

I noted the emergency bag on a desk just outside our room.  I was pretty sure that bag straddled our room and the room another child in the PRROTECT clinical trial was in...close enough for both of us, I thought...while I hoped fervently that there would be no need for it...

And while we waited for...something, anything to happen, nothing did. 
And sort of scary at the same time...
For if Susan tolerated the 60 mg peanut dose in the clinic, what were we to make of things going forward?

What would it mean?

The minutes dragged by, becoming a half hour, an hour, then two hours.
We were free to go -- but, Susan wasn't quite ready.
WHO could blame her?

Then, after an additional twenty minutes or so, Susan shrugged her shoulders and declared herself ready to leave.  I think she and I were both thinking it was not likely possible to stay long enough to ensure that she would be in the clinic if she had a delayed reaction.  

She was in a mood, and, as we walked out of the CRU, I could hardly blame her.
If anything, the uncertainty was worse.

I texted my friend the pedicurist (OK, she wears other hats, but, on this day, that was her role in Susan's life).  I told her we were on our way, but that I was not certain when we would arrive.  She said she would be there.  Incredible.  As I offered up thanks for her, I remembered to also appreciate the fact that, as the mother of a skater, she would not be horrified by Susan's "skater feet"!

After being pampered with new flip flops and a pedicure, Susan's mood improved.  

We picked up baked potatoes from our favorite potato spot -- Michael's Red Hots -- and headed home.  Susan climbed into bed with her potato and a book...and I followed her lead on the trundle bed next to her.  

We didn't talk.
What was there to say?

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