Photo by Rebecca Gould Photography

Wednesday, January 28, 2015


(Susan, tonight -- still pale after a day of rest, but happy to be attending her pottery class...)

A year ago, Susan had a 7.5 mm wheel on a scratch test to peanut. Yesterday her wheel was about 3 mm (that's almost not even enough to be considered allergic any more...of course, after what happened yesterday, we know just how unreliable scratch testing is).

A year ago, Susan had a delayed anaphylactic reaction (requiring epinephrine) to less than 50 mg of peanut protein spaced over a number of hours (it is hard to know how much because the doctor stopped her peanut challenge mid-dose).

A year ago, Susan was formally enrolled in PRROTECT (an Oral Immunotherapy clinical trial for peanut allergy with Xolair).  She became a number -- SLT L-03

Eight months ago, Susan failed a rapid desensitization to peanut (where the goal was 250 mg of peanut in incrementally increasing doses over a 5 - 8 hour window) at the 60 mg mark (again, it is hard to know exactly how much peanut she consumed during this challenge, because she vomited mid-way through a dose).

Five months ago, after a painful 12-week course of open-label, injected Xolair, Susan flew through that same rapid desensitization to peanut, reaching the 250 mg dose of peanut without a single issue.  

Three months ago, Susan completed an eight-week course of rapid oral immunotherapy to peanut, with weekly updoses, increasing her tolerance of peanut from 250 mg to 2000 mg.

Two days ago, Susan took a 2000 mg home dose of peanut at 7:30 am and then I dropped her off at school (just before 8:00 am).  While she was restricted from physical activity for two-hours post-dose, the parental observation requirement had been lifted, as she was tolerating the home dosing so well.

Yesterday, Susan failed a 4000 mg peanut challenge.  
She was devastated.
And I didn't know what to think.
  (I still don't, really...)

Last night, I thought it would be clearer today.
I spoke with the principal investigator at length today.
She was patient with me, and kind and reassuring.
She did not, in actuality, have answers to many of my questions.
Please know, she said, that a lot of things have not been determined.

The biggest, most looming question is whether or not Susan will be allowed to continue taking a maintenance dose of 2000 mg of peanut protein once the clinical trial concludes.  (While I remember being told early on that Susan would have to reach tolerance of 4000 mg of peanut in order to stay on a maintenance dose, much as with the idea of her receiving placebo instead of Xolair, it was too hard to truly conceptualize and understand what it would be like to face that situation.)

At this point, there are more questions than answers.
  (The future is SO unclear it makes my head spin...
   I feel out-of-control and hungry for information.
   I want to research...
   Google calls out to me...)
     And yet, for now, I have decided to wait.  To bide my time.  
     I have trusted the PRROTECT clinical trial team...
     and so I will wait while they work to find answers for this child of mine.

In a situation with more questions and answers...more to be determined than not, there is one thing that HAS been determined. 
Susan will not get a "second bite at the peanut." 
There will be no second 4000 mg peanut challenge.
The doctor explained that, despite what we were told yesterday, the protocol does not ever -- under any circumstance -- allow for a second 4000 mg peanut challenge.  

Susan averted her eyes when I explained to her this afternoon that the protocol does not allow for a second challenge.  I know my brave, stoic and determined daughter did not want me to see the tears in her eyes.  Had her eyes met mine, she would have seen her tears mirrored in my own eyes -- but I don't think she had to look to hear the tears in my voice.  Susan's bitter disappointment was palpable.  And I felt traitorous in that as I mourned her loss, I was simultaneously weak with relief that Susan would not be undergoing another peanut challenge -- at least not on the immediate horizon.

I feel certain Susan feels like a failure (they even CALL it a "failed food challenge").  She said as much.  In response, I pointed out that "it is just terminology," and I could tell, as Susan looked at me steadily, that she was challenging me to make her feel differently about it all -- and, of course, I could not.

(I feel like I will spend the rest of my life trying to convince Susan that she did not fail.)

Of course, she has NOT failed.
In the last year, Susan has gone from being extremely allergic to peanut to...less allergic to peanut.  (How much less?  That is, of course, the question...)

In May, before my shy, quiet, humble and reserved Susan had even begun the rapid desensitization to peanut through oral immunotherapy, she reached deep inside herself and spoke to a room filled with nearly 500 people at the FARE Spring Luncheon.  She brought tears to my eyes as she explained how her food allergies had limited her life -- despite our best efforts.

Last summer, when she was experiencing almost daily adverse reactions to her peanut dose -- vomiting, extreme fatigue, skin changes and hives -- Susan committed to seeing the clinical trial through.  (I remember so clearly Susan saying that she was doing it not just for herself, but for others with food allergies.)  To this day, I maintain that many people would have walked away.  I think I might have. 

In the last year, Susan has self-administered epinephrine not once, but twice.  She cried the first time...and I bit back tears yesterday.  Food allergies are cruel.

In June, just hours after experiencing anaphylaxis while taking her daily dose, Susan competed in a local figure skating competition, placing second in a highly competitive field.  Months later, Susan took her daily peanut dose at the U. S. Figure Skating Upper Great Lakes Regional Figure Skating Championships while awaiting her results.

Again and again, Susan has demonstrated how tough she is...and while I know plenty of super-tough kids out there, no one wants a child to have to be tough, strong, or brave.  Looking back, I can say with certainty that there is not one ounce of failure in Susan's last year...

Susan can now tolerate 2000 mg of peanut, which is approximately 8 peanuts.
She's what some people call "bite proof."

While the uncertainty about whether or not Susan will be allowed to continue taking a 2000 mg maintenance dose of peanut protein (which is likely required to maintain her tolerance) once she completes the clinical trial in Week 52 (late June), the doctor assured me today that even at a daily dose of 2000 mg, Susan should experience a life-changing improvement in her quality of life.

I'm trying not to think about the question of whether or not Susan will be allowed to continue with a 2000 mg maintenance dose of peanut protein, as that piece is complicated...

(But if we can sort that out...AND WE WILL, I assure you...)

EVENTUALLY (after Susan completes the clinical trial, in Week 52 -- late June)...

Susan should be able to fly. 
  (While she has her eye on Greece, I'm thinking we'll do a short, over-land-only flight first...St. Louis, anyone?)

Susan should be able to eat more freely.
  (Her sister Meg cannot wait to go shopping for a slew of $5 gift cards -- Bent Fork Bakery, Baker Boys, Frost, Jolly Good Fellows, Dairy Queen, Baskin Robbins, Subway...the Ghirardelli Chocolate Factory...the list goes on, I am sure...)
  We'll go sample cheese to Susan's heart's content -- watch out Caputo's, Whole Foods and Mariano's -- she's going to make up for lost time!
  We'll try Indian and Chinese and Thai food...and whatever else Susan dreams up.

Susan has already been to not one, not two, but THREE movies in a movie theater.  (I even let her go to the last one without me, although I sent her with a very responsible friend and lurked nearby in the mall.)  The dark, peanut-laden theater seating is no longer as scary as it once was. some point (probably not until next year), Susan is going to sit at a regular lunch table.

As disappointing as Susan's inability to tolerate the 4000 mg dose of peanut is, the clinical trial has NOT been a failure.

It certainly did not go as we imagined it might.
But, if I step back just a bit, and try to get out of my own head, I can see things a bit more clearly (at least I think I can...).  
This really is a matter of perspective...and, well, peanut powder.

Susan cannot tolerate as much peanut as we hoped.
And she might well be stuck with peanut flour dosing far longer than she wants...

But, she IS safer than she was a year ago.
A lot safer -- even if I cannot measure how much...

A bright woman who attended Grinnell (my college) observed astutely, in response to my blog yesterday, "I'm glad you and she are at a place where you weren't prepared for this (anaphylaxis) -- because all year, every visit, you were, I think?"

Yes, we were.
And then...we weren't.

And there is an important reminder in this -- one that, as a long-time food-allergy parent I should not need...but, here it is -- always be prepared.

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