Photo by Rebecca Gould Photography

Sunday, April 12, 2015

The Bravest Kid I Know

I am shaky.
And my heart is racing.
  (Epinephrine will do that to a kid...and to that kid's parent, too...)
My thoughts are whirling as I write this.
(I am not sure I am going to be able to concentrate well enough to finish it, but I want to try.)

I feel like (I hope maybe) writing will help me process what happened.
Writing usually helps...

This morning, Susan had an anaphylactic reaction to her peanut dose, which is 2000 mg of peanut protein, or 8 1/2 Peanut M & M's. 

Susan took her dose a bit later than usual (but not outside the dosing window), because she had an early-morning viola lesson.
She was reading in her bed when, nearly an hour after her dose, her sister walked into her room and observed that Susan's face was really, really red. 

Susan went downstairs to see my husband, and then the two of them went up to the third floor, where my home office is, to see me.  By the time Susan got to the third floor, she was wheezing and said that she was "having a hard time breathing."  She had felt fine (and didn't even know her face was red when her sister observed how red she was).  I could see how red Susan was, and also observed that her nose was really drippy...and that she had beads of sweat standing out on her forehead.  I handed Susan two Benadryl while she pulled out her EpiPen.

We both knew Susan needed epinephrine, although for a split second I had a hope that she might not need it.

I wondered about Susan's future in the clinical trial if we had to administer epinephrine, but I knew that would not stop me.  While I hoped -- for a split second -- to see something that would reassure me that Susan did not need epinephrine, I knew -- from looking at her, from listening to her breath, that she needed epinephrine.

We did not hesitate in our decision to administer epinephrine.

We did not have to discuss whether or not Susan would self-administer -- she took the EpiPen in her hand, removed it from the case, uncapped it and then pressed it against her leg, crying.
She didn't press it hard enough -- I could tell as she did it, and I knew for certain when I did not hear the auto-injector release...that she hadn't pressed it with enough force.

She looked at me and said "I am going to do this."
Susan pulled the EpiPen away from her leg, to allow for more momentum and counted "1, 2, 3, 4, 5, 6."

I said "NOW," her hesitation scaring me...and she jabbed the EpiPen into her leg, holding it there, crying all the while.  As I held Susan, I could feel how hot she was, and hear the rasp of her breathing.

Food allergies are scary.
Food allergy treatment options are scary, too.
I am beyond thankful for epinephrine...
And while all that Susan has gone through since she was enrolled in the clinical trial saddens me...and scares me, too -- mostly because I have seen again and again how quickly an allergic reaction can escalate -- I am also thankful that she has learned first-hand (again and again) how quickly epinephrine helps her.
I am thankful for the multiple opportunities Susan has had to self-administer her epinephrine since she was enrolled in the clinical trial.

The epinephrine helped immediately.
With shaking hands, I paged the on-call doctor for the clinical trial (under any other circumstance, I know that I would need to call 911 -- and I don't want how we handled this situation to ever cause anyone to do anything other than call 911).
She called back right away, and knew it would be me on the other end.
She recognized my number.

I wish that weren't the story of our journey in the clinical trial, but, it is.
We talked -- about how Susan was right then, about what had happened, and about Susan's dose -- working to understand what the cause was.

As usual, there are more questions than answers.

Is it hormones? 
  Certainly, at 12 1/2, Susan is at an age when hormones are changing, when "cycles" are not yet cycles...

What about the way Susan's skin looked yesterday?  Was that related?
  Yesterday, Susan's skin looked red and slightly irritated.  I hadn't seen it that way in a long time, so I took note of it.  I reminded the doctor of how Susan's skin had looked early in her home-dosing -- red, irritated -- "hivey" to the me who had never seen a true hive -- and told her that Susan's skin had been the same way the previous day.  Could that be related?

Was that 1/2 of a Peanut M & M not truly a half?
  There is no way to know -- but I will say that it isn't easy to split a Peanut M & M in half (and, it was never the intent of the study coordinators that we have to split a Peanut M & M, as the dose for 4000 mg of peanut protein -- the original goal, which Susan could not tolerate -- is 17 Peanut M & M's).

Was there a problem with that particular batch of Peanut M & M's?
  Interestingly, the eight Peanut M & M's that Susan took came from two snack-sized packages that her sister and my husband purchased from some boys who were selling them for a fund-raiser (they came in a package that had six snack-sized packages -- which contain a mere five Peanut M & M's each) yesterday.  She had been dosing with pastel Peanut M & M's.  

I sent my husband dumpster diving.  (In our own garbage can -- is it less gross to go dumpster diving in your own garbage?  I'm not sure...but I absolutely wanted the wrapper to the package, as I will be calling M & M Mars...)


Is Susan sick or getting sick?
  Not obviously.  She did have a slightly sniffly nose yesterday morning, but nothing had come of it and she was fine this morning -- no sniffles, no temperature, nothing obviously wrong.

Just the other day, we stocked up on pastel Peanut M & M's -- at 50% off and in colors Susan enjoys.  Before we made the purchase, I asked Susan if she was sure she wanted to keep eating Peanut M & M's.  She assured me she did.
Did I tempt fate in some crazy way?

The on-call doctor agreed -- more questions than answers.
THAT is such a frustrating part of this journey.

Before we hung up, I had two questions I had to ask the doctor.
  (They were related in my mind, even though they are not actually related...
   I somehow had them jumbled up together.)

I prefaced my first question with an assurance that I already knew the answer (and I did).
(I know I will always err on the side of epinephrine -- I do not want to have to live with the regret of hesitation.)
  Do you think Susan really needed epinephrine?
  Yes -- yes, if her breathing was affected, she did.
  Of course, I knew it all along...but then I had to ask the second question -- the one I knew Susan wanted me to ask but was afraid to voice.  I saw her watching me solemnly as I asked...

I prefaced my second question with the statement that I knew Susan wanted to know the answer...and I could tell by the look on her face that I was right...even though a part of me wondered how -- after all that she has been through -- she could still want to see the clinical trial through.
  The doctor was less reassuring than I had hoped.
  She said she wasn't sure.
  She said she would have to check the protocol. 
  She talked about what might happen if Susan had to withdraw from the clinical trial.
  I valued her honesty, but I wished for something different.
  I advocated a bit, saying that if there was any room for consideration, any "gray area," Susan wanted to see the clinical trial through.  Even minutes after reacting to her dose, Susan was nodding her head YES -- she wants to keep eating peanut. 
The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.

We talked about next steps, and agreed that Susan would likely follow the same course she had when she had the adverse reaction to her 1/2 of a Snickers Bar in February, although the doctor wanted to check with the other doctors involved to be sure about the plan.

While I waited to hear back from the on-call doctor for the clinical trial, I reorganized our plan for the day.

-- I found a substitute goalie for Susan's soccer game.  (I talked to three sympathetic mothers of goalies who subbed for Susan during the winter indoor season...each of them taken aback when they learned Susan also lives with food allergies...)

-- I handed off preparation for and running of an important Webelos I den meeting to my husband -- I was not comfortable leaving Susan (even with him, and that's on me, not him)...and I couldn't imagine effectively leading four 10-year old boys through the last pieces of the Citizenship badge requirements...

-- I cancelled Susan's plans with a friend (she felt she would be too tired, and we did not want to disappoint her friend at the last minute).

-- I sought (and received) permission for Susan to attend her sister's post-season banquet (the team is strict about RSVPing and paying in advance, and I had not been planning for Susan to attend, but since she was not going to be with her friend and since staying home alone was absolutely not an option, I had to sort that out...).  Thanks, Bev Beck.

-- I got out of pre-event volunteer commitment for said banquet.  Thanks again, Bev Beck.

I watched over Susan.
I took deep breaths.

I wondered aloud about the difficulties we have had trusting our "halves" as I handed Susan the document entitled Getting Your Daily Peanut Doses at Home.  I acknowledged that she would likely have to eat Peanut M & M's for a while longer while proposing she look at the options to see if there was something that might be easier to measure accurately.  (And trust me, this is NOT about the "ease" of things...for if it were, we wouldn't still be in the clinical trial...)  Susan looked carefully at the list of options, and wondered about dividing 3.5 teaspoons in half...and then spied the Reese's Peanut Butter Cup option (for her, the dose would be a single full-sized peanut butter cup -- my favorite peanut butter product ever and something I have gently suggested countless times...always reminding myself that since Susan is the one eating her dose, Susan should be the one to pick what she eats.

I should be secretly pleased that she is thinking about eating a Reese'sPeanut Butter Cup.
But I am not.
(I loved how happy she looked with her hands full of Peanut M & M's and I loved the idea of those being her "forever" dose.)
I looked forward to working with her doctors -- post clinical trial -- to get from 8 and the dreaded 1/2 to a full 9...but if today's anaphylaxis was caused by a "too big" peanut or peanuts, we are far, far from increasing Susan's daily dose to 9 Peanut M & M's.

I am watching over Susan now.
I am taking deep breaths.

I am marveling at the fact that Susan wants to stay in the clinical trial.
I am tired, and this has been an incredibly difficult year.
I do not believe in quitting, but, honestly, if Susan said she wanted to be done, I don't think I would even try to discuss it with her...we would just simply be done...having given her best go at finding a treatment (no, not a cure) for peanut allergies.

I cannot imagine ever trusting Susan's daily peanut dose...
  (and perhaps this is what I was meant to learn this year -- that while Susan might be safer in some ways as the result of the clinical trial, she will always need to carry epinephrine, she will always need to be ready to self-administer in the case of an anaphylactic reaction, she will still be allergic to peanut...)

Today, Susan is the bravest kid I know.
I struggled with whether or not I could say that, for I have witnessed children fighting incredibly difficult battles with cancer and I know children who live with terribly difficult medical and psychiatric conditions.
But, for today -- Susan is the bravest kid I know.
She could walk away from this all -- no more daily dose of a food that could kill her, no more sleeping with her EpiPens on her pillow, no more dosing-related exercise and/or showering restrictions, no more missed school for clinical trial appointments -- but she has chosen not to do that.

And as I reflect on Susan's conviction, I find myself thinking that maybe it isn't really so much that she is so brave -- maybe the fears and restrictions she lives with now are "better" than those she had to live with before we started the clinical trial.  Maybe not flying, not seeing movies, almost never eating out and not eating anything that hasn't been thoroughly researched and checked for risk of cross-contamination is also pretty scary.

In fact, I know it is, for I remember that life well.

The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.

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