Photo by Rebecca Gould Photography

Saturday, June 7, 2014


As I went about the business of life all morning, Susan's afternoon updosing appointment lurked in the back of my mind.  I was not so much worried about it as I was aware of it.  The rational part of my mind knew that it could be fine...but the ever-present worrier was not quite convinced.

This would be our second updose this week.  Acceptable, within the protocol, but, not (I didn't think) all that typical, as most subjects are able to tolerate more peanut protein at Week 12 than Susan was -- thereby decreasing the number of updoses required.

30 mg of peanut protein
30 mg
3/25ths of a peanut
12% of a peanut

So little...and yet, for someone like Susan, so very, very much.

(Will every updose feel like this -- or is this one especially hard because of our history with it?)

Susan's body already demonstrated to us two weeks ago that even that very small amount was simply too much peanut (More Questions than Answers).  

But, even if Susan IS in the control group, and has been receiving the placebo instead of Xolair injections, there is still the hope that more traditional oral immunotherapy (OIT) might increase her tolerance of peanut.

The question is -- how much might it increase her tolerance of peanut...and how quickly?

Obviously, despite my best efforts to hold worries at bay, the 30 mg dose had taken on some sort of larger-than-just-a-number my mind, and...just maybe, in Susan's mind, too.

When I went to pick Susan up at school, she was not waiting for me in the front office, as we had planned.  I did not know it at the time, but, it turned out the schedule for the day was not what she had thought it would be, and we had miscalculated where she would be at 11:00 am.  While she is perfectly comfortable reporting to the front office during a passing period, she is NOT comfortable telling a teacher at a specific time that she needs to leave.  

As I sat in the office waiting for Susan to come down, I had a stress-driven moment of feeling irritated. We needed to get going.

Who knew what traffic would be like?  [Een at my worst, most uncertain moments, I am always grateful and thankful for this opportunity.  I know there are countless other children like Susan out there who will not have this same opportunity.  While we have (regrettably) been late for appointments at the Clinical Research Unit, I think it is important to be respectful of everyone's time, energy, and the space within the CRU.]

(Looking back, I'm all but certain that the stress was WAY more about the idea of Susan eating 30 mg of peanut -- a dose we KNEW she had not been able to tolerate two weeks earlier...)

While I can drive from Susan's school to Lurie Children's Hospital without really thinking about it very much, I was worried that we would not be on time, so, I used my smart new navi to plot the route and give me an estimated arrival time...and I was pleased to see that my car predicted we would be there in about 40 minutes -- downright FAST!

As we flew toward Lurie, with none of the traffic we have grown accustomed to, I asked Susan (social worker hat on) -- "So, how are you feeling about today?"

(It all came pouring out, in a jumbled, rushed, anxious sounding way.)
And just as I got set to explore that a bit more, I realized that Susan had moved on...

I glanced in the rearview mirror and saw she was studying for a series of Accelerated Language Arts mastery exams.  I wrestled with what had happened -- what she had (sort of) shared...with the fact of our abandoned conversation -- and decided to let it go.

I am continually impressed by Susan's ability to buckle down and focus -- and there we were, driving to an appointment where she was going to eat the very same dose of peanut that resulted in a delayed reaction a mere two weeks ago and Susan was...studying.  Incredible.  As I drove, I marveled at her focus, her composure, her drive to just get it done...(on top of what I was quite certain was anxiety about what was to come...)

As we drove in silence, I realized that all of Susan's greatest strengths -- as a student, as an athlete, -- carry over -- at least for her -- to the clinical trial.  It most decidedly has NOT been easy.  It has been scary, and hard, and (at least for me) it has shaken the very sanctity of our peanut-free home.  And yet, Susan is going to see it through.  That's she is.

Anyone who has ever parked in the garage at Lurie knows that experience can leave a great deal to be much so that once, in total desperation, crossed a "Do Not Enter" sign to snag the only spot I had seen.  

On this day, however, parking was...easy.  Very.

The voice that lurks in my head (friend, foe or just supremely, paranoidly overly cautious -- I have never been able to decide...) was loud...and oddly competing with itself, in a schizophrenic sort of way -- our efficient, uneventful journey was the sign of something good to come...or, perhaps not.  

As Susan and I walked over the pedestrian skyway to the hospital, we chatted about inconsequential things...everything, and yet, nothing.  She didn't say a word about the 30 mg dose, and yet, I knew she (and I) were both thinking about it when she reached for my hand.  I offered up a moment of thanks that my 11-year old was still willing to reach for my hand and paused.  While I was so thankful, I also wondered about what she was thinking...and was grateful that I could be her anchor.

It must be so hard to be doing such a difficult thing, such a scary, potentially life-threatening thing -- at any age.  And yet, especially so at this age.

We arrived early in the Clinical Research Unit (CRU) and were promptly ushered to our room.  I immediately noticed the red and black emergency bag was already in the room...zippered tightly shut...(with a suspicious bag of fluid on top of it that I did not ever remember seeing before) and I offered up a quick hope that it would stay...that way.

The visit moved quickly -- height, weight, vitals, lung capacity and lung function tests...and then it was...time.

The clinical trial coordinator presented me with the prescription vial containing the 30 mg dose of peanut protein...

Susan is WAY OVER the peanut protein-and-flour barely-hidden-in-chocolate pudding and has recently decided that smoothies are the way to go.  As we had our own frozen fruit and vanilla whey protein concoction with us -- complete with a bullet blender -- the clinical trial coordinator simply provided the milk I requested and handed over the prescription bottle filled with 30 mg of peanut protein, allowing me to make Susan's drink.

On the one hand, I was pleased -- I think we have arrived at a really good way of Susan taking her dose...on the other hand, I think I really prefer it when someone else mixes up the dose.

For, even in the safety of the CRU, my hands were shaking as I poured the dose into the frozen peaches, mangoes and pineapple that Susan had selected for her smoothie.  Will this ever be any easier?  For while I believe in what we are doing, it still scares me -- in so many ways, on so many levels.

And yet, I remind myself that I want to take my cues from Susan.  For while she may be scared, and uncertain and while she most certainly has unanswered questions, through it all, she is also committed to the clinical trial.  

With all the fears the clinical trial brings, it also brings tremendous, immeasurable hope. 
As I watched Susan drink her tropical smoothie -- filled with healthy fruits and protein filled vanilla whey and milk...and just a smidgen of peanut protein (the very thing we have spent the better part of our lives as parents protecting against), I marveled, as I always have (and always will?) at her composure, her trust, her certainty...

And then, as if to underscore her commitment to getting it all done, just a few minutes after finishing the 30 mg dose of peanut protein, Susan met with a tutor provided by Lurie to help her prepare for a make-up Accelerated Math test.  Unencumbered by the pulse-ox monitor (on her big toe), Susan buckled down to tackle scatter plots and other graphical data...

while the doctor, clinical trial coordinator and I looked on -- watching carefully for even the slightest of changes in her condition.

Susan's blood pressure bounced around a bit...and she became flushed...and we observed the development of more "hives"...but, nothing more.  Incredible.

Perhaps traditional oral immunotherapy (OIT) is working for Susan.
Perhaps she IS receiving the Xolair (and she just got off to a rocky start?)...?
Perhaps...perhaps this really will be worth it all...

As the minutes ticked by and the hour mark approached, Susan and the tutor agreed that she was "more than comfortable" with the material.  Special thanks to our friend Rachel Fisher, who spent more than an hour with Susan earlier this week, when we weren't sure Susan would have this opportunity at Lurie.  (While the results are not in, Susan reported that she did "well" on the make-up math test...)

At the two-hour mark, with mild (at most) symptoms observed, Susan was released from the CRU.  She wanted to go back to school to complete one of her make-up tests, but, traffic was conspiring against us, and so...she decided some more.

Efficient, to say the least.

Accelerated Language Arts test prep -- Done
30 mg Peanut dose -- Done
Advanced Math test prep -- Done

if Susan keeps knocking off the challenges in this efficient manner, maybe -- just maybe -- she WILL reach tolerance of the 250 mg dose by Week 19.

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