In Other Peoples' Heads

You know that phenomenon where complete strangers inexplicably feel comfortable touching a pregnant woman's belly?  Some ask, some don't.  Either way -- it is a complete and utter violation. 

We experienced this phenomenon recently after my 9-year-old twins shaved their heads as shavees in a St. Baldrick's fundraiser at their school.  My son's and daughter's freshly shaven heads -- especially Meg's -- were like magnets.  Sure, some people asked:  "Can I touch your head?"  Others did not, simply shrugging apologetically while reaching out to feel their nearly-bald heads -- explaining (apologetically) that they just could not help themselves.

And while I haven't talked about it at all until today, I have been experiencing that phenomenon in regard to the clinical trial.  Of course, the people I have experienced this phenomenon with are NOT complete strangers.  They are (mostly, in a very generalized sort of way) people we know peripherally in our community, friends' of friends, even a distant relative (or two). 

The first time it happened was right after the food challenge that Susan underwent to be admitted into the clinical trial.  It was a very difficult day (One Day, Two Food Challenges), and the severity and atypical nature of Susan's peanut allergy was underscored by a series of delayed and ever-worsening anaphylactic reactions the night of the food challenge (Beyond Brave).

Someone actually called me (bigger, bolder than similar interactions that happen by chance when I encounter someone in the community) to voice her concern over our decision to allow Susan to participate in the clinical trial. 

I was stunned. 

Speechless. 

I listened, and, as much as I wish I could say I responded from under my social worker hat, I'm pretty sure I did not.  Honestly, when I sat down to write this, I tried to recall what I said, but, between the emotional nature of my reaction at the time, the passage of time and all that has happened since, I simply do not remember what I said.  I DO know that I tried to both defend and explain (perhaps all wrapped up in one breath)...and then, with a flash of insight, I realized that there was nothing I could say or do that would help this person understand.  So I politely thanked her for calling and wished her well.  What more could I do?

I wanted to yell at her, to MAKE her listen to me...

I wanted her to think (even for just a minute) about all of the ways Susan's life is different (I initially wrote less, but, I so badly do not want that to be the case that I immediately deleted it)...

I wanted her to just try to imagine what it is to be the parent of a child with food allergies -- to live in fear of an accidental (or worse!) exposure or ingestion...to live in fear of the very things most children look forward to -- ice cream, birthday cakes, Halloween.

And yet, with a clarity I do not usually have (at least not in moments like those), before I even wandered down that path, I realized there would be no point.  This person would never understand...

This woman is a mother.

I wish I could say I have not given this phone call a backward glance, but that would be untrue.

It rattles around in the back of my mind.

How could a mother -- any mother -- not be able to understand that I just want to try to keep my daughter safe?

Since that day, there have been those who have casually wondered aloud -- to me or to others I know -- about the sense in this clinical trial, those who have questioned our decision to allow Susan to decide whether or not to continue (to push forward)...there have been some e-mails, and even a text message.  And then there are those few individuals who are certain they know better (best?)...and want to tell me just what it is they think we should do.

If I put my social worker hat on, and look at this phenomenon -- examine it from all sides -- it is fascinating, really.

But as a mother, as the parent of one of the bravest, most determined young women I know, it angers me that anyone would presume to know what is best for Susan.  (For how can anyone know what is best for her if this is something my husband and I still grapple with?) 

The anger is not one of those big, flashy, red-yellow-orange hot angers...it is more a slow, simmering anger.  Days go by without me really attending to it...and then someone visits that spot -- wonders why we are subjecting Susan to this...wonders why we haven't demanded something more from the doctors...(and I think -- what, exactly, should we demand?)  The doctors are incredible -- they see Susan as a person, have advocated for her, and are always, always available to us.  The doctors don't have the answers any more than we do -- but maybe, just maybe, if we stick with this -- if we do the hard thing -- some day maybe there WILL be answers.

I do not expect these people to understand -- for none of them (that I know of) have walked even a minute in my shoes, let alone two moons.

I do not expect these people to understand.

(How COULD they?)

But I do not want these people to judge, to criticize...to decide they know better without being fully informed...without having LIVED this very difficult, ever-vigilant life.

I am sure there are people in my circle -- and not just my friends -- who really don't get this whole clinical trial.  

I am sure there are those who are puzzled by our decision to participate, to stay in the clinical trial, to move forward -- perhaps some of them are even fairly certain that if Susan were their child, they would not pursue this course.  That's fair, of course.  But, this group is comprised of those who have chosen to stand along side us, supporting us as we try to find our way forward (through, perhaps is a better word) this difficult and uncertain time.  And I am thankful for each and every one of those supporters -- silent and not-so-silent alike.

There is a lesson for us all in this, of course...

(And I am reminded, as I often am, of all that we have gained from and through Susan's participation in the clinical trial...)

3 Xolair Injections

 Tuesday was a BIG day.

After the clinical trial coordinators requested permission from the site coordinator to move Susan to the open label Xolair injection arm of the clinical trial due to Susan's inability to tolerate increasingly high doses of peanut, Susan and I felt relieved...and oddly, strangely, a bit disappointed -- almost as though Susan's inability to tolerate progressively higher doses of peanut was a failure in some way.   [For those who have missed an entry or two, in Week 17, Susan was taking, but not tolerating a 60 mg dose of peanut protein.  The Clinical Trial doctors decided to decrease her dose to 45 mg of peanut protein in the hope that she would tolerate it.  This was a move in the wrong direction, as the goal was for Susan to be able to tolerate 250 mg of peanut (one whole peanut) by Week 19, which looked less and less likely as she struggled to tolerate the updoses.]

Failure.

Yes.

That sounds a bit crazy, even to me, but it is true.

This feeling -- that we [Susan?] had failed in some way was underscored (and EXPLAINED -- thank you) by a dear friend when she said:  "I am so sorry the clinical trial did not work."  I paused, seeing clearly -- understanding -- the feelings of failure. 

It was with relief that I explained to my friend that it was possible that the clinical trial worked exactly the way it was supposed to -- if Susan was in the control group...IF those painful, burning injections she endured every other week for twelve weeks were...the placebo.

And so, it was with mixed feelings that we drove into the city for our appointment in the Clinical Research Unit (CRU) on Tuesday.  While I was thrilled beyond belief by the knowledge that Susan would begin receiving open label injections of Xolair, there was a part of me (that fretful, worrisome, negative part of me) that wondered -- were we starting anew -- returning to Week 0 only to go down a similar (hard) path in twelve weeks?  (This is, of course, only likely in the highly unlikely event that Susan has been receiving Xolair injections from the start...)

While Susan gave voice to this possibility, wondering aloud if Xolair ever does not help someone, when I think about her mood, the mood in the room...when I look at the pictures I took...I know she was feeling hopeful...optimistic, and I was, too (well, mostly...save for that little voice lurking in the back of my head...)

Susan was all business during the breathing tests. 

And I could not resist photographing the pre-prepared, clearly labeled syringes filled with what I hope is a miracle medicine for Susan...

[I have already had several people ask -- why THREE injections?  It does seem rather a lot, I would agree -- while I don't know the amount in each syringe (although I suspect I could have known had I thought to turn over the syringes), I do know that this is the dosage that was calculated based on Susan's IgE levels at the time she was enrolled in the clinical trial -- First Food Challenge.]

Susan was the most relaxed I have ever seen her during the injections.  (Of course, we were TOTALLY joking around with her...and I am sure it did not hurt knowing that she was receiving open label injections of Xolair.)

She went from serious...

To..smiling.  As mom, I know that is a for-real smile.  With hope like this, how could she not smile?

And then (because we were being really goofy -- and not a one of us in the room could sing AT ALL), Susan was cracking up!  (How could she not?  Even I was laughing at how pathetic we sounded...)

And then, even though she was getting an injection (her third), Susan was "licking up her baby bumblebee!"  I love that Lydia's mother's antics carried over as they did during this visit to the CRU (Surreal).

I could not help but grill Susan after the injections:
-- Did you feel anything any different?  
-- Was there anything AT ALL different?  Anything?  At ALL?  

No, mom.
(As I told myself -- it means nothing.  Right?  Right.  But still...I wonder...)

Because Susan is now in Week 0, everything starts again -- including the two-hour observation period post-Xolair injections (this is true for the first three injection visits). Allergic kids are allergic to things -- including...um, medication.  So, it is really important that they be observed after a new medication is introduced.

So, Susan and I settled in to wait.  We knew there would be a blood draw (SO last on Susan's list)...but, other than that, we had no great plans for the two-hour waiting period.  Wait. That's not true.  She intended to royally beat me at Bejeweled Butterflies...but, other than that, we had no real plans.

And then, the clinical trial coordinator offered us what can only be described as a gift (although I doubt she saw it that way, doubt she understood the significance of what she was offering us...).  She suggested that Susan take her 45 mg peanut dose during the post-Xolair injection window.  

We didn't talk about it, but, we didn't have to.
We were both thrilled.

She took care of ordering a pre-measured dose from the pharmacy (if I never had to measure a dose of peanut protein again -- especially in my own home -- it would be perfectly fine with me, although, of course, this is part of what we have signed on for, and I will continue...).

Then came the task of figuring out what Susan would take her peanut dose in.  Options were limited, as she WILL NOT do applesauce and she would prefer not to do chocolate pudding [oh, she knows she will have to eat chocolate pudding during the food challenge (or applesauce!), but, other than that, I think she is trying to avoid chocolate pudding...].  

I was so frustrated, because the clinical trial coordinator offered two very viable options -- ice cream and Italian Ice.  Both options were available on the CRU, but, they were so poorly labeled that I had to actually call both companies to find out whether or not there was risk of cross-contamination with peanut.  (I do not take issue with the fact that these products were available on the CRU, as this unit serves any number of children with various medical concerns -- but, I am ever so frustrated by our country's exceptionally poor food labeling laws.  That's "next" on my list.)  Neither product was safe.

Susan, who liked the idea of taking her peanut dose in the CRU for -- oh, let me count the endless number of reasons -- was more flexible about the vehicle in which she would take it than usual.  After discussing our dwindling options, she settled on yogurt.  I went down to the cafeteria, where I was pleasantly surprised to discover a wide array of yogurts.  Loving technology, I texted the options to Susan, who picked blueberry Yoplait.  She is lump-averse when she takes her dose (hence the regular use of the Bullet blender), and felt the blueberries would disguise any lumps...

See how happy she looks?

It was (unfortunately) fleeting...

As she prepared to take the first spoonful, she had one of those unusual (and predictive) burps...and then she vomited violently.  I was stunned.  So was she.  It happens so fast.  

As stunned as I was (I THOUGHT she was tolerating the 45 mg dose), I was almost relieved to have it happen while she was sitting there, in the CRU.  The doctor, who was not in the room at the time, did NOT miss the action, as there is a glass window between the office she was in and the room Susan was in.  No one has ever given any hint of disbelief when I have called to report these episodes of vomiting, but, still, I liked knowing that they had seen it happen.  

And then I was struck by a horrible thought -- what if the vomiting meant Susan wasn't tolerating the Xolair?!  Fortunately, given Susan's very recent history, no one thought that!

Pre-dose vomiting = Pause, Information Gathering, Consultation and then a Pow Wow.

In the end, Susan and I were given the opportunity to weigh in heavily on the question of dosing.  

Arguments in favor of holding Susan at the 45 mg dose:
-- Decreasing a dose (and we had already decreased her dose from 60 mg to 45 mg) can result in greater intolerance...(this is a theory...no more science in my mind than much of the rest of this...)
-- The fact (let's face it -- hope) that the Xolair (maybe even the three injections she received on this day) should begin to help with tolerance issues
-- Achieving tolerance of 45 mg would likely improve Susan's chance of reaching tolerance of 2000 mg
-- Safety concerns

Arguments in favor of decreasing Susan to a 30 mg dose:
-- Greater likelihood of tolerance going forward (this was short-term thinking)
-- Decreased stress on her body (mind, and soul)
-- The idea that if her immune system was less stressed, she might respond more favorably to the Xolair
-- Safety

Laid out as it is above, it seems pretty clear (retrospectively) that we should move to a 30 mg dose...but, it really was a difficult decision as we sat there with the doctor and the clinical trial coordinator.  I was clear that I could argue the decision both ways, as was the doctor.  In the end, when Susan said she wanted to decrease the dose to 30 mg, the decision was easy.  With no clear-cut, easy answer, Susan's clear preference made the decision easy. After all, in this land where Susan has so little control, I liked the idea of giving her some control...

A medication was added...

And the clinical trial coordinator called the pharmacy (again), which, in turn, provided us with a 30 mg dose of peanut protein. 

I went back down to the cafe and purchased my second blueberry Yoplait of the day, which Susan consumed without issue (phew!).

Then we had the small issue of what to do with the blueberry Yoplait yogurt that had the 45 mg dose of peanut in it.  I could not eat it, as the peanut is cut with flour (read:  gluten). And try as we might, we just couldn't get anyone on the CRU to eat it!

So, there it sat...
Lonely.
Alone.
(Contaminated.)

  
As we hung out, waiting for the two-hour observation period to pass, I turned the peanut dosage decision over and over in my mind.  While I was feeling relieved and thankful that Susan would be taking a dose she had tolerated fairly well (setting aside the vomiting-outside-M. Henry incident), I could not help but reflect on how difficult the road had been for the little ground we had achieved...

Susan's dosage road map.  Laid out this clearly gives credence to everything I have felt and said about how difficult this time has been for Susan, for me, for our family...a road nearly to nowhere (and back).

May 22, 2014  --  30 mg home dose
May 23, 2014  --  15 mg home dose
June 2, 2014  --  22 mg home dose
June 5, 2014  --  30 mg home dose
June 9, 2014  --  45 mg home dose
June 17, 2014 -- 60 mg home dose
June 20, 2014 -- 45 mg home dose
June 24, 2014 -- 30 mg home dose

If not for the three open label Xolair injections Susan received, I am sure we would both be incredibly discouraged...

As I sit processing the dates and dosages I laid out above, I am struck not only by Susan's perseverance, but by her doctors' perseverance.  This has not been an easy road.  And I am so thankful for their steady support through this time.

Week 0 included a blood draw, and the great nurses in the CRU brought out Buzzy Bee again. Having read the science behind Buzzy Bee, I am fairly certain it is not just his darling face that helps during painful procedures, but, it certainly didn't hurt that Susan giggled when we tucked Buzzy Bee into her sleeve...

And when the blood draw was over, Susan got an awesome flower-power Band-Aid.  The nurses actually buy fun Band-Aids and donate them to the hospital...Susan and I have begun collecting fun (latex free) Band-Aids...

Because, in a clinical trial for peanut allergies, the Peanuts Band-Aids the hospital has had for years simply don't do it!  

Sobering -- Current list of medications added since introduction of daily peanut dose:

10 mg Zyrtec -- morning
20 mg Famotidine -- morning
20 mg Omeprazole -- 1 hour before peanut dose

After two hours, we were cleared for departure (from the CRU).  I joked to Susan that maybe some day because of all that she is enduring now -- she will be "cleared for departure" for real.  It has been so many years since she has flown that she didn't get it.

We had a quick lunch at Maggiano's and then hit Barnes & Noble, where Susan found a new (to her) three-book series.  Susan was in a good mood -- the 30 mg dose felt very easy to her, and she was happy to have received the Xolair injections...

It was all good.

 Happy Skating Hands

With a darling skating buddy.

Finding Common Ground

Ever since Susan spoke at the FARE (Food Allergy, Research & Education) Luncheon (In Susan's Voice), she has been talking about attending the 2014 FARE National Food Allergy Conference, which was last weekend (June 20th, 21st and 22nd). 

Then Susan met Lydia, a 14-year old girl from Wisconsin whose allergy profile is very similar to Susan's.  Before they ever met, Lydia was already planning to attend the FARE conference...and knowing that Susan would get to hang out with Lydia and Lydia's friend Cecilia made Susan that much more interested in attending.  I investigated a bit and learned that the "Teen Tract" of the conference was open to those aged 11 and older.  A friend who heard Susan speak at the FARE Luncheon opined that Susan was sufficiently mature and encouraged me to let her attend.

Susan was clear that she wanted to attend.  I, on the other hand, was torn -- especially as the conference drew closer.  Susan had a very difficult week the week preceding the conference, with multiple delayed reactions and vomiting episodes.  She was exhausted.  While I could see the value in connecting with others living with food allergies, I could also see the value in a low-key weekend spent hanging out at home, reading, relaxing, napping.

And, if I am totally, completely honest, I might have been just a bit maxed in my role as the parent of a child with food allergies.  I was not certain that a weekend immersed in food allergies was at all what I needed. 

And yet, I did not want my reluctance to attend to deter Susan.

So, I never said a word about my not wanting to go...and I didn't mention at all my feeling that a low-key weekend at home might be more exactly just what she needed.

I did, however, repeatedly ask if she was sure she wanted to attend.

And I showed her the schedule on-line -- asking her to look at it to be sure the sessions interested her.  (I was thinking she might decide it sounded more like "school" if she looked at the sessions, and then might decide not to go.  Of course, she likes school...)

I understood just how serious Susan was about attending the conference when I saw that she was expanding the title of each session so that she could read the detailed descriptions of each session.  And when I say each, I don't mean just the Teen Tract sessions -- I mean all of the sessions.  She even ever-so-carefully (but very pointedly) suggested several specific sessions she thought I might want to attend.

I had some trouble registering on-line [I am sure it was a combination of the very late date and the fact that I was trying to register as a (new) FARE member].  And then I got an e-mail informing me that walk-in registration the day of the event was available.  I used this series of events to decree that we would play the conference by ear.  I told Susan we would see how she felt on Saturday morning and make a decision about the conference at that point, all the while assuring her that if she felt up to going, we would attend.

I would be dishonest if I did not admit that I was (at least) half hoping that Susan would decide not to attend come Saturday morning.  While I wanted all that promised to be good for her, I also wanted a break from food allergies myself -- and there was no way to have both.  And, given all that she has been through, I was NOT going to deny her...anything.

We set an alarm Friday night -- early, as the conference started at 8:00 am and Susan wanted to shower and blow dry her hair before we went.  As I watched Susan look at the weather forecast and pick out her clothing for the next day, I was pretty sure we would be attending.  As a pretty serious athlete, she rarely puts much thought or energy into her appearance.  We both went to bed early. 

Sure enough, Susan popped out of bed when her alarm went off.  While I asked her again if she felt well enough to attend the conference, I could tell that she had already definitely decided we were going.  I resigned myself...willing to admit (to anyone but her!) that it would not have been my choice of a way to spend that particular Saturday...

I prepared Susan's peanut dose to take with us -- chocolate whey protein, 45 mg of peanut and our bullet blender.  We could not quite reach agreement about when she would take the dose.  Susan did not want to take her peanut dose at the conference, but, there was a part of her that wanted to stay through the teen reception, which I thought would probably go until about 9:00 pm.  Reminding myself that she was not herself for any number of reasons (and probably a combination of reasons), I let it go.  I wasn't worried that Susan would resist taking the dose -- and I saw her behavior as a way to control a situation that had begun to feel very much out of control (at least to me).  I figured we would revisit the issue of the peanut dose over lunch at a Chipotle we had already identified.

Susan was anxious to find her friends when we arrived at the FARE conference, and fortunately, the on-site registration process was quick and easy.  I accompanied Susan to the room in which the first teen session was being held and peeked in to be sure she was in the right place.  I was kindly but firmly rebuked -- no parents or adults were allowed in any of the teen sessions. 

I resisted my urge to pull one of the volunteers from the room -- to explain that Susan was in a clinical trial, that she had not been tolerating her peanut doses well -- in short, to ask that someone keep an extra eye on Susan.  I wanted to -- so, so badly.  But, at the same time, I knew that what Susan needed, more than anything, was to be normal in this peer group of others living with food allergies. 

I backed out quickly.

I connected with Lydia's mother, who assured me that Lydia and Cecilia would keep an eye on Susan.

I settled in to my session (a full floor away from Susan).

I texted Susan, reminding her which session I was in...and reiterating our plan to meet during my break.

A better "student" than I, Susan did not reply.

As the day passed, I became increasingly glad we were there.  The conference was great on so many levels -- while I could NEVER have articulated it before going, it was (actually) exactly what I needed.  I learned new things in every session I attended, and found the speakers to be knowledgeable, compelling and compassionate.

There was also plenty of time to connect with old friends and to meet new people...to reconnect and to connect with parents of children living with food allergies.  I overheard people talking about my blog and was (as I always am when I look at how many people have viewed a certain post) moved to hear that the story of our journey is helpful and inspiring.  One enthusiastic parent described Susan's bravery to me with total admiration -- and we shared a laugh when I admitted that Susan is my daughter and saying, "Yes, I admire her commitment and determination every day." 

I was absolutely entranced during the session on current research and studies.

I was encouraged by much of what I heard...while simultaneously discouraged by the very clear fact that pretty much everything in the works is a treatment.  Not a cure.

[We are light-years, it seems, from a cure.  But, for kids like Susan, with the most severe allergies, even treatments have the potential of being life changing.  In the hardest, bleakest moments of this, I remind myself of this fact.]

Even with the constant presence of the sobering facts and realities of food allergies, I was refreshed, restored and rejuvenated.  I could not believe I nearly missed this incredible opportunity.

Furthering my really good feeling about the conference was the fact that I could see Susan being rejuvenated as the day wore on.  She was connected to others just like her.  

My quiet, stoic girl told her peer group about her experiences in the clinical trial.  She talked about her first food challenge, and told them what it was like to eat a food we have avoided for all of life as she knows it.  She talked about how scary her delayed reactions are, and shared with the group what it was like to self-administer her Epi-Pen (she even told them about pulling it out right away and having to self-administer a second time).  While she has friends with food allergies, she has not had anyone just like her to process this experience with, for those friends haven't ever asked her about the clinical trial.

She needed that, so, so badly.

Where has my social worker hat been?

Cecilia, Lydia, Susan and Kaylen

Little did I know (until later) that Susan also wrote about her experience in the clinical trial.

I was deeply saddened when I came across this:  "right now the clinical trial is really hard, I "throw up" nothing and then my stomach feels sore because I tried to "throw up" nothing.  I don't enjoy the experience at all, but, it might get better when I get the injections."  (Susan gave me permission to include a picture of her writing because "it's all true, Mom.")

As I was standing in the common area of the conference (during a session from which I played hooky so I could continue talking with a mother I had met), Susan, Lydia, Cecilia and another girl flitted lightly by me, casually informing me that they were going to attend an art therapy session.  (The Teen Tract was covering food allergies in college and the four girls had decided to opt out.)  The four girls looked like they had known each other forever. 

Susan never looked back.

(And even though I wanted her to, I did not will her to.)

I smiled.

The woman I was talking with captured my thoughts exactly when she said, "that is why I came."

If I could not let go (just a little bit) at a food allergy conference, where would I ever be able to let go?

As the day wore on Susan and I visited the vendors, collecting raffle tickets and certificates for samples.  We shared a casual lunch...and, over lunch, Susan told me that she absolutely positively wanted to stay for the teen reception.  We agreed that she would take her peanut dose at 5:00 pm, when there was a natural break.  I liked the way she looked, the way she sounded, the connections she was making. 

We collected samples, finding two new products Susan loves.  Skeeter's Nut Free Chocolate Chip Minis (which she currently eats with every peanut dose -- a "perk" of sorts...) and Pascha Organic Dark Chocolate.  We were both beyond impressed when she took the large bar out of the box -- check out the awesome wrapper on this bar of chocolate!  (In case you have trouble reading it, it says it is Peanut Free, Tree Nut Free, Gluten Free, Wheat Free, Dairy Free, Soy Free, Egg Free & Sesame Free.  WOW!)  She is a HUGE fan of the one pictured, with Goldenberries.

And then, it was time for Susan's dose.  I bought milk in the cafe and then commandeered the only outlet available.  

We had quite a few curious onlookers, and I explained that the frothy chocolate concoction held her peanut dose.  People paused, smiled, cheered her on.  

And then, unexpectedly (for Susan tolerated the 45 mg dose without issue on Friday), she developed several hives on her lips.  And she got teary.  And white, and shaky, and she felt nauseous.  

She had a desperate, panicky look on her face -- I couldn't tell how much of it was because of how she was feeling and how much of it was driven by her incredibly strong desire NOT to vomit in public.  To this day, I believe Susan willed herself not to.

We sat.

I talked to her.

I didn't know what to say, so I encouraged her to relax, to think about something relaxing.

And then, slowly, she was better.

She was still incredibly pale, but, she started asserting her wishes.

She did not want to leave.

She had a celebrity meeting to attend with pro football player Adrian Peterson.

She wanted to attend the reception.

We bumped into Lydia and her parents and they (risking Susan's contamination of their room) invited us to hang out in their hotel room.  I am quite certain Lydia's mother knew Susan was struggling to hold it together by the look on Susan's face. 

Susan, Lydia and Cecilia snuggled up, watching a movie.

As I sat in their hotel room, a ferocious storm raged outside.

I watched Susan carefully, marveling at her fortitude, her determination, her will.

And as the minutes passed, she began to feel better.

We got passed the two-hour observation period without issue.

Lydia's mother offered Susan the Enjoy Life t-shirt she received after touring the Enjoy Life facility the day before the FARE conference began.  She made Susan's night!

We went down for the reception.

I wish I could say I allowed her to walk into that "teen only" space freely, but I couldn't quite do it. 

As soon as Susan was in the room, I knew I had to do something.  I found a volunteer in the hallway and began explaining.  I didn't get far before he held up a hand, saying "hold on."  He disappeared into the teen room, then came to the door and motioned me in.  Hoping Susan would not be upset, I crept in.  I explained her situation to another volunteer, who had me point Susan out to her.  I have never been as grateful for anyone as I was at that moment, as the volunteer assured me that she would keep a close eye on Susan. 

Susan and her friends had a great time at the reception.  Celebrity photo opportunities, great music, caricatures, a green screen, glow sticks and an assortment of allergy-friendly beverages made the night a smashing success.

Susan, Cecilia, pro football player Adrian Peterson (who lives with food allergies he developed as an adult), Kaylen and Lydia

So tired she could hardly think straight (really!), Susan did inform me clearly that she wanted to return to the conference on Sunday.  And so, without hesitation, we did.  It was just what we both needed.