Breakfast of Champions

Sometimes, a picture is worth a thousand words.

Today, I am going to rely on three.

(Susan, party-way through her 1/2 of a Snickers Bar at 8:20 am today.)
"It's GOOOOOD...kinda like a Mars Bar (Canadian version of a Milky Way), but crunchy, with good chocolate.  And way better than my Smooth Monkey peanut dose!"

Susan's brother, Carl, happy to help out with the second half of her Snickers Bar.
"Why waste a Ziplock, Mom?"

Meg, holding her favorite part of a Snickers Bar (the wrapper!)
"I only like my peanuts from a jar, Mom."

HALF a Snickers Bar, Anyone?

Today, Susan went to school.  I dropped her off shortly before lunch.  She was still pale, and I could tell she was tired, but, I also think she wanted to see her friends.  I think she looked at her schedule (a block day, so, only half of her classes) and tried to decide when to go based on the academics of it all, but I saw the look on her face when I suggested we get her there for lunch.  She needed something normal.

Today, I had lunch with a friend.
I needed something normal.

Neither my friend nor I felt particularly put-together, so we picked a casual place...which was a good thing, because she ended up on the phone with the school social worker and I...ended up on the phone with the clinical trial coordinator.

Not recognizing the number, I almost let the call I have been waiting for (but did not really expect yet) roll into voice mail...and I am so, so thankful that my friend recognized the number as being from Ann & Robert H. Lurie Children's Hospital.

I hurriedly answered after allowing three or four rings to pass, and was so glad not to have missed the call when I heard the clinical trial coordinator's voice on the other end.  I think I missed the very first few words of what she said, because the first thing I remember hearing her say is "dietary peanut."

My mind spun as I looked at my friend and repeated it back...
Dietary Peanut?
(as in...REAL FOOD???)

My friend listened intently... 

I asked the clinical trial coordinator to repeat herself...as she explained that she had also sent me an e-mail with detailed information.

Reeling, thinking I loved what I had heard but not quite believing it, not quite truly trusting it, and knowing that I needed to take notes, I reached for my laptop computer, which I -- thankfully -- had with me.  I pulled up the e-mail and stared at the blurry, too-small attachment she had sent...it was exactly the same chart we had seen weeks earlier, in anticipation of Susan passing the 4000 mg peanut challenge and moving into dietary peanut.

Someone had written in, by hand, 1/2 of item.

In just over 48 hours, we have gone from a failed 4000 mg peanut dose and uncertainty about dosing beyond the clinical trial to consumption of real peanut.

Incredible.
Amazing.
Unreal.  

In the space of just two patient days, we have a real plan...not just for today, or tomorrow, but...for the future.

As I hung up, my friend said, "Let's go buy Susan a gift."
As we poked around, looking for something perfect, I kept repeating, "I can't believe it.  Incredible.  Amazing -- she can eat real peanut."  As I marveled at our incredible fortune in the face of what had felt like failure, I recognized that I was repeating myself...again and again.

My friend kindly assured me that she would listen to me as many times as I wanted to say it.

Finally, as I was waiting to pay for the most perfect gift, I said to my friend -- I feel teary...so happy, I could cry.

Putting her social worker hat on, my friend said, "The clinical trial was never about eating real peanuts or reaching 4000 mg of peanut.  It was always about being more safe and being able to do things like fly and go to the movies.  It has been a success since she has reached those goals."

Success in the face of what appeared to be failure.
Of course, as with much of the rest of the clinical trial, this has been about what we make of it -- about our willingness and ability to see the positive.

When I picked Susan up at school, I had a bag -- the bag had a Snickers Bar and a beautifully wrapped gift box.  As she pulled the Snickers Bar out, she looked at me, puzzled.  I held her look, and suggested she open the gift box.  As she did, realization dawned...and I confirmed, "You can eat real peanut -- starting tomorrow."

We talked about the logistics -- a half of a Snickers Bar seems awful prone to measurement error -- a ruler, a food scale...or, maybe, I offered, it would be better to start with something else.  Susan was clear -- while this has never been about the Snickers Bar, in some ways, it now is, for that's what she wants.

(And her brother has ever-so-kindly volunteered to help out with the other half!)

I took some pictures of Susan, wearing her new bracelets and holding the Snickers Bar I bought for tomorrow morning.  I see uncertainty in the picture, even though she assures me she is "totally fine" about taking her dose in a Snickers Bar.

I told her I thought it was just fine to be a little bit unsure...

And while she may be unsure, I am fairly certain that Susan will eat her half of a Snickers Bar tomorrow morning (a sure Breakfast of Champions!), for this is a hard-earned opportunity.

Tonight, as I tucked her into bed, she fingered her bracelets.  They are beautiful -- and I love what they say.

Go confidently...in the direction of your dreams.
My possibilities...are endless.

She's not planning to take them off.
Ever.

Perspective

(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.  AND...at 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.

4000 mg is Just a Number

I was not prepared for this.

Epinephrine.
Benadryl.
Prednisone.

Sure, I was worried that Susan would have trouble tolerating the 4000 mg of peanut protein challenge today...
  
  but I know that worry does funny things to my mind...
  it makes me think about things that I know are truly unlikely to happen...
  my worry could be crazy-making...

I try not to fall into that kind of worry...
  (I acknowledge it, but I do not let it live within me.)

I try to remind myself of "what the reality is likely to be."
I practice a positive script.

Yesterday, as I carried a pit of fear around with me, I pictured us stopping off at the Ivivva store for something fun (knowing Susan would have a clinical trial gift card to spend), and thought about where we might have dinner...

Susan's sister wanted us to walk over to the Hershey's store to buy a pair of Reese's Peanut Butter Cup headphones...

All positive, based-on-success, fun, celebratory things.

Should Susan feel like doing any of them, I'd be happy to, but right now she is sleeping off the effects of the IV-push Benadryl...while the machines do their job, monitoring her blood pressure and pulse oxygenation.


I am ever-so-cold -- shaky...the way I get after something super stressful happens.


My mind is filled with questions.  What does this mean?  What does the future hold?  In the minutes after Susan self-administered her EpiPen, I asked the clinical trial coordinator, knowing Susan had wanted such answers yesterday, hating that I hadn't had them for her then.  

The clinical trial coordinator reminded us that Susan's tolerating 2000 mg of peanut is incredible -- and I know she is right.  But, I also know that it is far from the goal -- far from the goal of the clinical trial, and far, far from Susan's Snickers Bar.  (While it has NEVER been about the Snickers Bar, we are at a point where Susan is really ready for her daily doses to be something other than peanut flour.)  

The clinical trial coordinator explained that while there have been a few subjects at other study sites who have not tolerated the 4000 mg dose, this is new territory for them here at Ann & Robert H. Lurie Children's Hospital.  And then she said Susan could try again in a month or so.

I think my mouth fell open.  Really?  I managed to ask (somewhat incoherently) about an updose between the 2000 mg dose of peanut protein Susan is currently taking daily and the 4000 mg of peanut protein she could not tolerate today.  I think the answer was no, that that isn't done...but I didn't really understand why.  I think it probably has something to do with protocol.


Right now, I have more questions than answers.


Susan woke just long enough to tell me that she is "super sad" and that she wants to try to tolerate 4000 mg of peanut again.

Oh my.

She is looking to the future.

And I am stuck in the now.
I hate that she still has all that peanut in her.
As much as I hate vomit, I wish she would...just...vomit.

To Eat a LOT of Peanut

Susan has an appointment at Ann & Robert H. Lurie Children's Hospital in the Clinical Research Unit (CRU) tomorrow.

Susan will have her blood drawn.  As per study protocol, I am not privy to the results of her blood draws, but I know they will be looking at her IgE levels.

A year ago, Susan's IgE to peanut was 360.

A year ago, Susan's total IgE was 953.

Susan will undergo scratch testing to assess for a peanut allergy.

A year ago, Susan developed a significant, raised and itchy wheel.

Susan will undergo a 4000 mg peanut challenge.

(That's approximately 18 peanuts, or the equivalent of 1 Snickers Bar or 2 Reese's Peanut Butter Cups or 4 Nutter Butters...no matter what form it is in, I know it is a LOT of peanut.)

A year ago, Susan failed a peanut challenge after consuming a minuscule amount of peanut protein.  (She had to exhibit very specific symptoms in order to be enrolled in the clinical trial, so, despite hives and abdominal discomfort, she had to continue...)

What will tomorrow bring?

If I am honest, the images in my mind are scary.

-- I see Susan, blood running down her leg as she bravely self-administered a second EpiPen after she pulled the first one out too quickly.

-- I see Benadryl administered IV-push. 

-- I see the red and black emergency bag open, contents strewn. 

-- I see Susan, holding her EpiPen, trying to find the strength, trying to muster the courage to self-administer her EpiPen.

-- I see a haunting image of Susan, curled up, asleep after anaphylaxis during her failed rapid desensitization to peanut in May of 2014. 

Every image I see comes from the last year.

Every image is an important piece in Susan's story -- of our family's story.

Every image underscores how terrifying food allergies are...and how desperately our daughter wants to rewrite her future.

Every image makes me teary, and sad...and proud of Susan's incredible strength.

So much has changed...and yet so much is the same (as it was a year ago).

I so hope (as I type this, tears fill my eyes and my heart pauses, for hope does not even remotely seem strong enough) -- for Susan, and for the countless children living with food allergies, that as much as things are the same...something is now different.

Last year, Susan had a life-threatening delayed anaphylactic reaction to a trace amount of peanut.

Today, she consumed (and tolerated) 2000 mg of peanut at home.

  (That's about 8 peanuts)

So things ARE different.

Right?

Yes.

But...how different?

Has the Xolair and the Oral Immunotherapy (OIT) that Susan has undergone truly altered her autoimmune system?

In the 51 weeks since we began our clinical trial journey on February 11, 2014, we have turned back time, resetting our own clinical trial calendar from Week 17 in late June of 2014 to Week 0.  

Just recently, I realized that I have allowed the weeks between Week 20 (Susan's final updose to 2000 mg of peanut in November) and Week 31 (tomorrow -- Susan's food challenge to 4000 mg of peanut) to run together.  The edges of one day have bled into the next until...as difficult as it is to fathom, eleven weeks have ticked by and we are now on the eve of Susan's Week 31 4000 mg peanut challenge.

It has been easy (in some ways), not to think about what is coming...

Susan has settled into a routine.

She has taken her daily dose of 2000 mg of peanut protein (measured every so carefully every morning by my still unsteady hands) in a "Smooth Monkey" (think Ben & Jerry's Chunky Monkey) -- chocolate protein powder, a banana, milk and 16 1/4 teaspoons of peanut flour cut with flour -- mostly without issue.

(There was a time when I wasn't sure we would ever get to shade in all these peanuts...)

"Mostly" being the key word.

Susan has had two random episodes of vomiting...and some skin changes.

Nothing terrible, I don't think...but a very clear reminder that every day we are feeding our daughter something that could...kill her (still?).

I know that the 4000 mg peanut challenge tomorrow is the next step in the protocol.

And...I trust our doctors.

  (And yet, I remind myself, this is a study, a clinical trial -- this IS, after all, about more than just my daughter.)

I find myself thinking that given all that Susan has been through in the past year, she "deserves" an easy peanut challenge tomorrow.

And then, I find myself thinking about the child of dear friends who absolutely, positively, without a doubt "deserved" a better outcome.

     and I feel afraid

Years ago, a dear friend's child was in occupational therapy.

While in therapy, the child had an accident. 

The child was hurt.

The child's mother wondered aloud at her efforts to "fix" her child...

  and expressed her fear that the cost had been too great.

When I think about tomorrow, and Susan's challenge to tolerate 4000 mg of peanut, more than anything that friend's cautionary words ring in my ears.

Overseen

It has been nearly two years since we learned that Ann & Robert H. Lurie Children's Hospital would be a site for the PRROTECT clinical trial (Oral Immunotherapy for Peanut Allergy supported by Xolair).

It has been nearly eighteen months since I resigned from my job in anticipation of the clinical trial (knowing, but absolutely truly NOT -- even remotely -- understanding what was on the horizon).

It has been more than a year since we scheduled Susan's intake and screening appointments for the PRROTECT clinical trial at Ann & Robert H. Lurie Children's Hospital -- and I still remember how excited I was that day.  (It wasn't until later that the reality of the failed food challenge for peanut required to be enrolled in the clinical trial set in...)

I have more indelible images in my mind from the last year than my whole lifetime.  

Really.

Truly.

-- Brave, in my mind, will always be the image of Susan (hours after her failed peanut challenge required for enrollment in the clinical trial), self-injecting her EpiPen not once, but twice..the blood running down her leg...the scared and uncertain look on her face...terribly terrifying images for which I am thankful and grateful and...sad.  (NO ONE would pick this for a child, any child...of that, I am certain...and yet, I am also grateful beyond words for the knowledge Susan now has that she has successfully self-administered her EpiPen.)


-- Stoic, in my mind, will always bring to mind the image of Susan, shaky and pale after vomiting a 45 mg dose of peanut just two hours earlier -- bound and determined to compete the program she had prepared to skate.  (While it wasn't Susan's best-ever skate, it might well be the one I am most proud of, as she went after what she wanted, showing her grit and determination every second of the way.)


-- Determined, in my mind, will always bring to mind the image of my shy, quiet, humble Susan standing in front of nearly 500 guests at FARE's Spring Luncheon sharing her food allergy story, openly talking about how her food allergies have limited her life, and how terrible anaphylaxis is -- terrifying in and of itself and even scarier not knowing for certain that her medication will work.  


Over the last year, I have accumulated memories no parent wants to have.  I still remember how small...and insignificant...and vulnerable Susan looked as she lay sleeping after anaphylaxis during her failed rapid desensitization to peanut.  I remember watching the machines that monitored her vitals, feeling both thankful to have them and sososo scared that we needed them.  I will never forget the intense cold that enveloped me as I sat there, shaking as I kept watch on the machines that monitored my dear Susan, before climbing in next to her to hold her tight -- to keep her safe, I hoped.

The last year is comprised of the countless nights I laid awake watching Susan breathe, listening carefully for even the slightest change...and the mornings I allowed her to go off to school after taking her peanut dose, trusting those there to care for her as if she were their own.

I have changed in immeasurable ways in the past year.
As difficult as the last year has been, I would not change it -- not one bit, for the hardest, scariest moments are the very reason these clinical trials are so important...not just for us, but for everyone who is desperately seeking options.

I have learned how rapidly anaphylaxis can take a child, shattering families, schools and communities and terrifying those of us who are charged with keeping our children safe.  I have vowed to not ever have to live with the regret of having waited to administer epinephrine.

I have lost friends who do not -- simply cannot or will not -- ever understand or accept our decision to pursue treatment for Susan through a clinical trial ...and I have gained a community of people who -- like me -- are searching for a safer passage for their children. (I have come to understand the value of true friends, and am beyond thankful for those in our circle who have supported us even if they may not fully understand or agree with our decision...)

As I look back on our year, and think forward to Susan's upcoming food challenge (4000 mg of peanut), I find myself remembering a silence that I half-wish I had poked at a bit (social worker hat on).  As part of the clinical trial, we have been asked to complete questionnaires at various points.  Our first questionnaire was administered during our intake visit.  Mine was entitled "Food Allergy Quality of Life -- Parental Burden Questionnaire."

I don't know exactly what Susan's questionnaire was entitled, but I still remember the effort it took for me NOT to put on my social work hat and probe at her answers that day. Her private answers.  

I know the effort it took (takes, if I am perfectly honest) not to take advantage of the fact that I have easy access to my husband's answers in a scanned copy of the questionnaire in my e-mail...that I have not, and will not ever -- despite my curiosity -- open.

One thing that has NOT changed about me this year is my sense of what is right and wrong.  (For better or for worse.)  

My questionnaire is mine. 

Susan's questionnaire is hers.  

My husband's questionnaire is his.

Curious as I am, I would never go there.  I just don't think it is right -- not even to poke and prod at it with that social worker hat of mine on...

I am sure at one point I knew that we would see the intake questionnaire (or some variation of it) again during the clinical trial...but, I had lost track of it, and so I was a bit surprised to be presented with it during Susan's Week 18 updose appointment.

There were questionnaires to be done.

And...because there was no school that day, I had Susan's younger brother and sister along with me.

I completed my questionnaire.

Susan completed hers.

I did NOT look.

I swear it.

Even to this day, I remember -- yet another indelible image -- the moment realization washed over me...

For despite my very best intentions, despite my certainty that Susan's answers needed to be her own...and only for her eyes (well, at least not for my eyes, for surely others have seen and reviewed them...)...I saw a part of her questionnaire.  It happened so fast -- as I turned away from the sink, after washing my hands...

It wasn't much, really...just a part of the first page and even that was more a sense than anything...but, in that split second where I was seeing what was not for me to see when I was torn between once having seen wanting to see more and knowing that it was simply not right for me to allow myself to look beyond what I had accidentally seen.

I tore my eyes away.
And my heart sank.

For what I had seen was more than enough.

The answers are scaled, from 0-6, with 0 being "Not limited" or "Not troubled" and 6 being "Extremely limited" or "Extremely Troubled."  While my questionnaire was skewed toward the middle, with answers of "Moderately limited" or "Moderately troubled" and "Quite a bit limited" or "Quite a bit troubled," which are scores of 3 and 4, Susan's answers were skewed toward the 5's and 6s, with most of her answers being "Very limited" or "Very troubled" or "Extremely limited" or "Extremely troubled."  

And, as much as I wished I did not know, the questions Susan had answered were about eating out, and about being different from her peers...about social functions and gatherings.  

I felt heartsick.
I still do.
Every time I allow myself to think about it.

My strong, kind, compassionate and brave Susan is saddened and [very] troubled every time she is different, left out...restricted...limited.  And because she is the kind of person she is, she hides it.  

I always wondered if Susan was as determined to see the clinical trial through -- even when things were so difficult last summer -- as she was because of how difficult it is to live with food allergies.

And now I know.