Susan: "I'm Not Scared"

While we were at our second-to-last clinical trial visit, Susan and I talked with the doctor about post-clinical trial care plans and treatment options.  I raised the topic early knowing that since Susan never achieved tolerance of 4000 mg of peanut protein, there is nothing in the protocol about what should happen to Susan upon completion of the clinical trial  (Actually, the formal language makes me cringe, as according to the language, Susan "failed" to achieve tolerance of 4000 mg of peanut protein -- and, of course, that is accurate, but I still cannot use the word failed in conjunction with any part of Susan's participation in the clinical trial.)

I also remember -- early on -- back when we were filled with optimism...before I started to believe Susan had been one of two "controls" at our study site and therefore had not received Xolair injections during the build-up phase of the clinical trial -- that if Susan did not achieve tolerance of 4000 mg of peanut protein, she would not be allowed to continue taking a daily peanut "dose" upon completion of the clinical trial.

You know how you hear something but it is so far from your reality that you don't pause to let it sink in...to consider the possible reality?  Well -- that's what that moment was like.  I remember it (I do).  But, in recent months I have wished to have that conversation back -- to ask more questions...to demand a better (read:  real) plan -- to advocate (in advance, and on behalf of all children in the clinical trial).  I wish I could have that conversation back with the knowledge I have now.


During the course of our discussion during Susan's second-to-last clinical trial visit, it became apparent to me that the doctor had some concerns about Susan continuing on a home dose of 2000 mg of peanut protein after she completes the clinical trial.  (I wasn't at all shocked by this, as it has been a fear of mine since Susan's most recent reaction...but hearing her concern expressed did make me...pause.)  And, as Susan had expressed some interest in trying to increase her daily peanut dose (at some point), it became very clear that we would need to find a meeting of the minds.

[We're not there yet -- not at all...but, I am determined to find a middle ground, a safe meeting place...a happy medium.  I am determined that if it is important to Susan that she keep eating peanut, we find a way to do that safely...and if that means we will have to agree not to press forward toward higher doses (at least not for now), I can live with that, and I will work to help Susan accept the reality of where we are -- for now.]

I need to read, research and talk to people -- medical professionals, parents who have walked this road in front of us...those who are walking it with us...and anyone else who might help us chart a road through what is truly unchartered territory...while the doctors at the clinical trial do the same.  I am thankful beyond words for the doctors who have seen us through the clinical trial -- one of them has always been available to us, to guide us, to assure us and to reassure us...and yet I understand there there are limits to what they can offer us.

There are no clear answers -- Susan's experience in the clinical trial has proven that beyond a shadow of a doubt.

As a dear friend once said...you would rather be a horse than a zebra (when it comes to medical issues).  Unfortunately, if one thing has become clear in the past year, it is that Susan is a zebra when it comes to her food allergies -- rare, unpredictable, and without a discernible pattern.  In unchartered territory, she is an outlier.

While I have often thought over the past year -- and really, long before this, too -- that I would welcome a plain-old, more "typical" (read:  simpler) food allergy (not airborne or contact)...if that were Susan's lot, she would not be in the clinical trial, for we never would have sought such "treatment" options for her if she had a more "typical" food allergy.  And if that were the case...we wouldn't -- she wouldn't -- know her own strength.


The morning of Susan's second-to-last clinical trial appointment, she and I talked about what kind of a relationship she might have with peanut in the future while driving to Ann & Robert H. Lurie Children's Hospital.  By the time we arrived, I knew exactly where her head was on the subject of eating peanut (or continuing to) eat peanut.  She was very clear.  Not only did she not want to stop eating peanut, she also wanted to try to eat more peanut.  

While there is a part of me that sees the logic in this...that actually believes that if we can somehow get from where Susan is now to whatever "more peanut" might be...she would actually be safer...for there is (some) research to suggest that daily tolerance of a higher volume of peanut protein increases safety (thereby decreasing risk of a life-threatening anaphylactic reaction as the result of an accidental exposure)...but, only, of course...if such a dose is safely tolerated.  

And, a little voice says in the back of my mind -- continuing to eat peanut only makes sense if whatever Susan's daily dose is doesn't push her so close to whatever the edge of what her body can tolerate is that a tiny speck -- airborne, contact or in a cross-contaminated food might push her over, into an anaphylactic reaction.

Conundrum.
Too many uncertainties.


Because Susan had such a clear vision for what she wanted her future relationship with peanut to look like, I felt it was important for her to be a part of the conversation with the doctor.  Early on, she listened, multi-tasking (read:  gaming on her iPhone) while the doctor and I talked.  After several failed attempts at getting her undivided attention and hearing her voice, I finally took her phone (kindly)...stressing how important it was for her to have a voice in what happens next.

I got it.
As much as she is 12, and wants to have a clear voice in what happens next, she doesn't want to have to advocate for it.
She's only 12.
She wants me to figure out how to make it all come together.

That's OK -- she's doing the hard, scary work, after all.
I am going to try to manage the planning of it, gathering information, researching options, synthesizing...and ultimately, going back to her so she can weigh in.


As badly as I felt when I took Susan's phone, I was beyond glad that I had, for Susan engaged in what turned out to be a very interesting conversation with the doctor.  (Susan and I talked in the car on the way home, and it became clear to me that she didn't "hear" the doctor's unspoken, between-the-lines concern about continuing with a daily dose of 2000 mg of peanut protein...but even if she had, it was clear to me that she still wants to press on -- even if "on" just means staying at a dose of 2000 mg of peanut protein for the foreseeable future).

As we were discussing options (and let me be very clear -- no decisions have been made about what Susan's treatment will look like once she is discharged from the clinical trial), the doctor asked Susan if she is ever scared about taking her daily dose of peanut.

Susan responded quietly, but clearly and firmly -- "No."

I have to say -- I was surprised -- how could she not be (at least a little) scared about taking her daily dose?
I am pretty sure the doctor was surprised, too...because she asked Susan to explain why she wasn't scared about taking her daily dose of peanut.

Susan didn't hesitate.
She explained -- very clearly, logically -- rationally -- that for every time she has had a "bad" (read:  anaphylactic, life-threatening) reaction to her daily peanut dose, she has had many days where she has NOT had a "bad" reaction.

Oh.
Right.
So simple and clear 
   (sort of).

While it is hard to argue with logic like that, there was (and still is) a part of me that wonders how Susan could possibly view this so simplistically.

And yet, maybe she is right to look at it in that way.
One of the things I really appreciate about everyone involved in the clinical trial is that when they do not know the answer, or have a plan, they have consistently been honest about that.

I understand -- we are on the cutting edge here...
Maybe Susan is right not to over-complicate matters.


Later, Susan admitted to me that she was scared -- last May and June, when she was taking a daily peanut dose and was having very delayed reactions.  This was before she was moved to the open-label Xolair injection phase of the clinical trial, and she recalls -- even now -- how unwell she felt during that time.  

Somehow, it was reassuring to me that Susan was able to make a distinction between then and now.
While it brought tears to my eyes when Susan admitted she was scared last May and June (I knew it then, but, somehow it was harder hearing her say it), it was also helpful.

It affirmed for me what Susan said.
She IS NOT scared (at least not right now).

Susan's desire to continue eating peanut comes with hard-earned wisdom about how quickly life-threatening anaphylaxis can set in, changing the landscape of the day, the week...her future...

And yet, even knowing that, Susan wants to continue eating peanut.
The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.

We're going to keep living.

Susan has made it clear beyond question that she does not want to live in a bubble.

Susan does not want her food allergies to define or limit her.
She is willing to keep eating her daily 2000 mg dose of peanut -- even though it seems more likely than not that at some point she will experience an anaphylactic reaction to her dose.

I find myself thinking that at some point (once Susan has been discharged from the clinical trial) -- we might have to purposefully expose her to peanut -- in the air, on her skin...on my breath.  Maybe we'll go to one of those restaurants with crushed peanut shells on the floor (allergist permitting, of course).  The very idea makes me queasy, and a bit shaky...but if the clinical trial has been all about pushing Susan's tolerance of peanut in a (semi) controlled environment, this idea is similar...

We will walk in...to whatever the peanut-laden experience is with our eyes wide open...

I'm sure I'll be prepared for the worst, while hoping for...something better.

Susan is anticipating the day when she can walk into an ice cream shop and pick something off the menu (as long as it does not actually contain peanuts or tree nuts, I am going to let her have anything she wants!) or a bakery and pick something that looks yummy -- just because.

The list of just local places Susan has never entered...let alone never eaten from is mind-boggling:
Dairy Queen
Baskin Robbins
Dunkin' Donuts
Frost
Oberweis Dairy
Bent Fork
Baker Brothers
Jolly Good Fellows
Einstein Brothers

Those are just the few that came to mind quickly.  The list goes on and on.

Fifteen months into the clinical trial, with five anaphylactic reactions behind her, Susan is decidedly not scared of peanut, and while the future is clouded with uncertainty, I am tremendously thankful that the clinical trial has resulted in us getting to know the deadly beast.  

Now, while peanut still has the power to induce life-threatening anaphylaxis in Susan, she is armed with the knowledge and experience she needs to take care of herself.

Incredible.