Photo by Rebecca Gould Photography

Wednesday, December 31, 2014


(OK -- ALL of the time)...
It is sososo hard to be the parent
of a child with a FOOD ALLERGY.
Constant worrrrrry.

What's safe?

Is that truly a risk...?
or am I letting my heart...
run away from my head?

In the end, I can never really 
separate my head from my heart,
For as my daughter's protector...
          as my daughter's advocate...
  as the last line of defense...
the Responsibility is mine.

And now, we've added OIT

(Oral Immunotherapy -- supported with Xolair)...
We're up to 2000 mg of peanut
That's 8 peanuts
  (worth of peanut flour, in a prescription bottle...)
  No MORE.
  NO (less).
     Shaking hands.
     EVERY, every time I measure.

2015 is likely to bring 


January 27, 2015

Peanut Challenge to 4000 mg
(and -- then -- freedom?)
  freedom from meticulously measured peanut-flour doses...

And on to 
A Snicker's Bar for breakfast.
(false sense of) security?
  Ummmm...I THINK so.

January 27, 2015

Peanut Challenge to 4000 mg
(and -- then -- freedom?)
  freedom from meticulously measured peanut-flour doses...
Freedom from a peanut allergy?
  NO.  Not so much.
Freedom from Epi-Pens?

If a Snicker's Bar will soon be safe, 
          what else will be?
A Snicker's Bar AND a peanut?
  (we'll never know)
A Snicker's Bar AND a movie theater?
  (I suppose we'll test that out...)
A Snicker's Bar AND an airplane 
          filled with recirculated air...
          ...and peanut dust...
          ...and who knows what else?
  (I suppose...just maybe...we'll test that out.  MAYBE.)
  but only over land
  For what if it is NOT safe?

2000 mg of peanut.
Safer now, for sure.

  (I suppose.)

But what of that episode of vomiting?

The stray and random hives?
The occasional extreme fatigue?


     yes, maybe.
Not yet.

So far...and yet, so far still to go.


Beyond words.

Afraid of the future...

  afraid of the uncertainty of the freedom?
Beyond words.
More than ever, if that's possible.

Thursday, November 6, 2014

Uneven Footing

Susan consumed 1625 mg of peanut this morning
That's 13 carefully measured 1/4 teaspoons of peanut flour, or 6.5 peanuts.
(Incredible.  Hopeful, Promising.)

And yet, we are a peanut and tree-nut free household.
(Except for almonds -- Blue Diamond, to be exact.)

And Susan sits at a peanut and tree-nut free lunch table.

And Susan carries two Epi-Pens and an Avi-Q...
   and more Benadryl than she will ever need.

We live with strict instructions:
No new foods.
No new restaurants.
Nothing with risk of cross-contamination.
Everything is the same...and yet, is is immeasurably different.
  (At least, that is what I think...and hope...)

Where do we begin?

In this new land we can barely comprehend, how do we define what is safe?
How do we redefine the past?
  (Do we?)
How do we frame the future?
What do we tell others?

Perhaps my house SHOULD have peanuts.
Perhaps I should eat my beloved mini Reese's Peanut Butter Cups...
  (For what better place to test Susan's tolerance than in our home, on solid ground...with us present...)
But...are we to EAT PEANUT in Susan's presence?
Or perhaps outside?
Over the sink?
Over the garbage can?
(Or...maybe...just maybe, not yet?)

And if I were to...
Do I wash my hands, or not?
Dispose of my toothbrush, or not?
(Or...maybe...just maybe, we're not there yet?)

If I do not know the answers, how will she?
How will others?

Tuesday, October 28, 2014


There are a growing number of visual images and sensory memories I carry around with me in my head -- I think of them as "clinical trial snapshots."  And yet, they are so much more than "snapshots."  They are moments in time that are indelibly etched in my mind, in my heart.  While there are a growing number of such moments, there are two that truly stand apart from the others -- and they both involve the administration of an Epi-Pen.

The first one is from the of Susan's intake food challenge -- the night when she self-administered (not once, but twice), her Epi-Pen while I sat next to her, urging her on, offering to help, to hold her hand, to hold HER.  Susan drew a deep breath before injecting herself with her Epi-Pen the first time, and stabbed the Epi-Pen into her right thigh.  She immediately gasped and pulled it out, way, way too fast for the life-saving medication to enter her blood-stream.  Susan looked at me, realization dawning, and tried to jab the Epi-Pen back into her thigh, but the protective shield prevented her from doing so.  As she looked at me, I looked back at her calmly, hoping my fear and racing heart did not show.  I gave her another Epi-Pen, saying that we had "plenty" and that she could just "do it again." 

By that point, blood was streaming down Susan's leg -- and as she wiped at it with a tissue, I felt fear grabbing at my heart -- I wasn't sure we had time, and I didn't want to take the opportunity from Susan, but, I also did not want our goal of her self-injecting to put her at risk.  I sat next to Susan, watching her -- seeing a mixture of fear, uncertainty and resolve on her beautiful face.  And yet, precious seconds were ticking away...

I took a deep breath and said firmly, "Susan, if you are going to do it, you have to do it NOW."  She looked back at me, uncertainly.  I offered to hold her, to hold her hand, to help her...and she replied, "No, I need to do this myself."  And she did.  Incredibly, she did -- injecting herself, counting slowly, slowly to ten -- and then massaging her thigh.  Perfectly...or so I thought at the time. 

Those wasted precious Susan gathered the courage to inject herself not once but twice...could have had a terrible, devastating (unthinkable) result.

While I have always understood that time is of the essence when epinephrine is required, I did not really understand that every second counted until relatively recently.  And I feel that the import of those seconds is underscored by another moment in time that is indelibly etched in my memory...and this particular one has been making its way to the forefront of my mind more and more often recently. 

While I wrote about it at the time that it happened, I did not write about it in detail.  I simply wrote, "Susan bravely assisted the doctor in administering an Epi-Pen...and within minutes, she was much better...but exhausted.  We made her stay awake, talking to us, until we were certain the Epi-Pen had truly stopped the reaction."    

(At the time, it seemed like an accurate enough accounting of what happened.)

But, with the passage of time, and reflection juxtaposed against recent media stories about children whose Epi-Pens were available and about parents and/or medical providers who "held off" administering epinephrine in the hope that Benadryl "would do it," I have decided I need to write more fully about what happened in the seconds before Susan assisted the doctor in administering her Epi-Pen.

While Susan and I had talked about the importance of her taking any opportunity that might arise to self-administer her Epi-Pen, I had not reviewed that idea with her the morning of her rapid desensitization to peanut (looking back, I'm not sure why I didn't...but I am glad in some ways of this oversight, because of how things unfolded...)

The day of Susan's first rapid desensitization to peanut was difficult.  She showed mild signs of a reaction early in the dosing process and the symptoms increased and escalated as the doses mounted.  After Susan experienced some blood pressure changes, skin changes (read:  hives), and (eventually) increasing abdominal discomfort, the doctors decided to administer Benadryl intravenously.

As Susan's reaction progressed, she began vomiting with a force and violence that I now associate with food allergies.  At that point, she had had a cumulative total of approximately 180.5 (approximately because while she had consumed a .5 mg dose, a 1 mg dose, a 2 mg dose, a 4 mg dose, an 8 mg dose, a 15 mg dose, a 30 mg dose and a 60 mg dose, she only consumed part of half of the 120 mg dose) mg of peanut protein.

After she stopped vomiting, Susan complained that she was feeling like something was "stuck" in her throat, the doctor moved quickly to pull out the Epi-Pen.  Seeing what was happening, and recognizing the need for epinephrine, I started talking to Susan about self-administering.  Susan agreed to self-administer, and the nurse handed the Epi-Pen to Susan who then...hesitated. 

For a split second.

The doctor urged Susan on and again -- she hesitated...but only for a split second.  Really -- time stood still, and yet even at the time I knew Susan's hesitation to be brief.

With urgency, the doctor said very firmly, "We are going to do it together.  Now."  And so, Susan assisted the doctor in administration of the epinephrine.

As I have reflected on this (again and again and again, as the imagery, the senses, the memory plays relentlessly and without invitation in my mind), I have realized that even though I knew Susan was having a multi-system reaction to the peanut doses, I was not alarmed by her split-second hesitancy.  I felt like we had time.  Let me be clear -- I did not think we had much time, but, I felt like we had (enough) time.

I have come to understand that the doctor did not think we had time.
And I believe she was right.

By the time you see symptoms that clearly indicate your child is in danger, there may not be enough time.
DO NOT hesitate.  If you are even wondering if your child needs epinephrine, administer it.

We hear and read far more about those who hesitated and have lived to regret it than those who administered epinephrine quickly and with confidence.

Every second counts -- even when it seems like time is standing still.
Especially when it seems like time is standing still, for it most certainly is not.

Do not hesitate because your child could not possibly be having an anaphylactic reaction.
Do not hesitate because your child's throat only feels "a little funny."
Do not hesitate because your child has never received epinephrine before.
Do not hesitate because you/your child is afraid the injection will hurt.
Do not hesitate because you do not want to have to go to the ER.
Do not hesitate because you are hoping Benadryl will "do the job."

Do not hesitate for any reason.

Do not hesitate because you fear you have failed your child.  Those of us who are parents of children with life-threatening food allergies spend our lives trying to forge a safe path for our children.  And yet, we make mistakes...and our children develop new allergies (our daughter required epinephrine three times the summer she developed her soy allergy).

Know, as you administer the epinephrine, or support your child as he or she finds their independence -- it is not your fault...if a food is mislabeled or cross-contaminated...or you misread or misunderstood a label...and in the seconds that really count, none of that matters.

If your child is having an anaphylactic reaction, do not worry about the hows and whys behind it -- while it is crucial to try to understand the cause behind every single food allergy reaction, all of that can wait until your child is safe.

I do not think I could live with myself if I sat holding life-saving medication for a second (or two, or three) too long.  That some parents have to live with that knowledge horrifies me, and I am thankful beyond words that many of them have found incredible strength and openly share their stories.

Every second counts -- even when it seems like time is standing still.

Tuesday, October 14, 2014

Way Back When (A Retrospective/Our Food Allergy Story)

Everyone has a story they tell about how they discovered their child had food allergies.

I suspect, actually, that most people have several versions of their story...
-- There is the "elevator speech" version, a 20-seconds or less encapsulation of what was likely one of the most frightening times of their life as a parent --
-- There is the "disgruntled parent speech" -- the impassioned plea for understanding and compassion delivered in the face of those who just don't get it...
-- And then there is the real story -- reserved for those who really want to know, who listen, express concern and care, ask probing questions. 

I don't think many parents of children with food allergies often tell their full story.

Since I have begun writing about Susan's journey, I have had many people ask for more information about the past -- about Susan's life (our life) before Eating Peanut began.

I have spent a lot of time thinking about our story -- I think there are three parts.  Before, Now After that is substantially different.

In my head, Susan's story begins with a single plain M & M I gave her on Halloween day.  She was just 14 months old, and it was her first chocolate, although she had had chocolate frosting.  I knew almost immediately that something was wrong -- she sort of choke/gagged on it and just as I was frantically trying to extract her from her high chair, thinking she was choking, she managed to dislodge it along with a thick ball of sticky mucus.  She was gasping, and continued to cough (gag) up phlegmy white...stuff.

I was alarmed -- I had never seen anything quite like what was happening with Susan, and it did not seem right.  Once I was sure she was breathing well enough, I called my (first) pediatrician (who specialized in allergy and immunology).  He was not available to take my call, so I left a message with a nurse who I'm pretty sure thought I was a panicky first-time mother.  Anyone who knows me knows I am decidedly NOT panicky, but...I do think that's what her assessment of me was at the time.

My pediatrician called me back a few hours later (by which point Susan was fine).  He was confident she had a stomach bug, and advised me not to take her out for the rest of the day (or night).  I was disappointed -- she had a darling teddy bear costume I wanted her to be able to Trick-or-Treat in and I was puzzled, too, as it just didn't seem to me like Susan was sick.

I inquired, with fear in my voice (and heart) -- Could she be allergic to chocolate?  My pediatrician assured me that there was no way she could be allergic to chocolate.  (Bear in mind that he is now my former pediatrician.)  He explained that children are rarely allergic to chocolate.  After learning that she had previously had chocolate frosting, he asserted strongly that if she were allergic to chocolate, Susan would have had a reaction the first time she ate it.  He inquired about hives, which I denied.  He added that nothing I described sounded like a food allergy.

Since our former pediatrician specialized in allergies and immunology (a fluke, not a conscious choice), I let my concerns about a chocolate allergy go, breathing a sigh of relief.  (I do love my chocolate...and I am happy to say that Susan does, too -- she just cannot eat any that might be cross-contaminated with peanuts...and as I have come to understand the severity of her peanut allergy, I have come to believe that that plain M & M way back in 2003 must have gotten too close to a peanut M & M...).

With all that I have learned over the years, I now know that Susan's allergy story actually begins earlier -- a lot earlier.  While Susan was a darling baby -- smiley, easy-going, generally content and happy -- her cheeks and chin were often red and irritated.  To this day, I remember an encounter I had in the grocery store with a very elderly woman who got too close for my comfort and then asserted (right in my face) that Susan "would have a life of food allergies."  At the time, I backed away, thinking she was...crazy -- demented...senile.  (I can honestly say -- as pathetic and uneducated and irresponsible as it now seems -- that I did not understand the connection between food allergies and skin...)

(I wish I could say those cheeks were rosy from the weather, but, in truth, that's how they always looked...)

But really, Susan's food allergy story -- the story of my family's journey down this very scary path -- begins earlier than any of those things I can truly identify...I just don't know where.

-- Is it a matter of genetics?  Years ago, we participated in a study at Children's Hospital -- the results revealed that my husband had a peanut allergy.  Who knew?  He lived on peanuts and peanut butter as a was a staple in our vegetarian house until the severity of Susan's food allergy became apparent to us. 

-- Or what if it is the result of the infertility treatments we underwent?  Did our quest for a child in some way make Susan more vulnerable?  I haven't seen any official study results, but it is my strong impression that children who are borne of infertility treatment are more likely to have food allergies.  (Incidentally, I think the same is true for multiples...although my twins -- also borne of infertility treatments and quite clearly multiples do not have any food allergies.)

-- Terrifyingly, what if the peanuts and peanut butter (and almonds and cashews and walnuts) I ate while I was pregnant with Susan -- and while nursing her contributed?  What if something I ate brought this on her?  Even now, more than 10 years since I stopped nursing Susan, it makes me feel just a little queasy to think that the very things I ate in an effort to nourish myself (and in turn her) could have played a role in the development of her food allergy.

-- What if those immunizations I refused to give concurrently -- frustrating my pediatrician, I am sure --altered her immune system allowing this crazy peanut allergy to move in and set up residence?  I have never been certain about immunizations -- I know there is research that both supports and discredits the idea that immunizations can lead to terrible conditions like autism, ADHD and asthma (and food allergies is on that list these days, although it was not at the time that we had to make vaccination decisions)...and I am always careful not to start the debate -- for who really knows the answer?

Sadly, while progress is being made in the management and treatment of food allergies, there is much that is still not understood about underlying causes...and I believe we are years away from anything that could truly be called a cure.

As I sit reflecting on Susan's food allergies -- the ways in which they have, despite our best efforts -- defined and shaped her life -- I feel tears pricking my eyes, and the back of my throat gets that tight, tingly feeling I always have when I am trying not to cry.

I think about the prenatal vitamins I took long before I rejoiced in the news that I was pregnant with Susan, the grams of protein and servings of vegetables I counted from the first possible moment of inception, the sleep I made sure I got every night...the wine I did not drink...everything I did to try to ensure that Susan had the best possible start in life...and I feel -- terrible thinking anything I did, any decision we made -- contributed to Susan's food allergies.

And while I have worked hard over the years to accept that there is no way to change the past, and to accept the idea that even if I could change the past, it might not make a difference...for what would I change?

What I did not know until years after the episode with the plain M & M was that -- as the result of a very unlikely series of events -- Susan was given a peanut-butter filled cracker from one of those very processed packages that are typically sold in vending machines while she was with a babysitter.  (Of course, because of the way things played out, she was NOT with our regular babysitter...she was with a babysitter who was helping out our regular babysitter, who had Susan-responsibilities for a longer-than-typical time period while I was in Indiana for work).  I have heard that Susan didn't really eat much of the peanut-butter filled cracker...but that's all I know about her first exposure. 

I sometimes think about those peanut butter crackers...and I wonder -- what if?  (The list is long...)
  -- What if we hadn't needed a substitute babysitter for an hour?
  -- What if I had known more about food allergies?
  -- What if I had told the young woman who was responsible for my child that she should not give Susan anything containing peanuts?
  -- What if I hadn't been working?

And the worst...?
  -- What if what I now believe was Susan's first exposure to peanuts had been...worse?

After the M & M incident, Susan became the queen of random weird gagging/choking/vomiting episodes.  While they did not have enough in common for me to ever tease apart a true cause, they happened while we were eating out more often than while we were eating at home...they came on fast, were violent, and quickly as whatever it was started, it was...over. 

I talked with my pediatrician repeatedly about these "vomiting" episodes.  I tried to explain that it was more that Susan was coughing and gagging to the point of vomiting -- and I underscored that the "vomit" was more like thick, sticky mucous.  Looking back, I now know that my momsense was telling me something important -- I just did not really understand what it was at the time.  With every episode, I grew more concerned that something was wrong -- but what?

Eventually, despite my pediatrician's reassurances, I started to think food allergies must be playing some sort of role...but I couldn't figure out what the "common denominator" was.  I had a friend whose daughter was diagnosed with allergies to dairy, egg and tree nuts...but her symptoms were much more typical (read:  hives).  Had anyone suggested I keep a food diary, I suspect I would have started to pull the threads together on my own -- chocolate (often cross-contaminated), things that had been deep-fried, eating out...

Rereading this, I am mortified by how little I knew.
And then I remind myself that this was more than ten years ago.
(People didn't know then what they know now...)
And when I think about what I now know...there are simply no words.

At Susan's two-year check-up, I expressed my concern that Susan might have a peanut allergy.  I did not have much in the way of real "evidence," and when I denied ever having seen a hive on Susan, my (former) pediatrician expressed his confidence that Susan did not have food allergies.  I don't recall exactly what he said, but, I do remember leaving his office thinking "SOMETHING is not right."

During that 2-year check-up, my pediatrician (now former, remember) suggested I give Susan a small bit of peanut butter to "see how she did."  Uncertain, but, wanting to trust him (after all, he specialized in allergies and immunology and at that point there was so much I did not know about food allergies), I followed his instruction and presented Susan with an entire piece of toast smothered in peanut butter.  (I had NO IDEA what I was dealing with at the time, and thinking back on that moment makes me feel ill, even now.) Susan did not want to eat that (deadly) peanut-butter-on-toast, which was uncharacteristic of her.  I pressed her and she eventually took a tiny bite of it, started crying, gagged on it, and then spit it out.  Even after she had "vomited" it up (I struggled with the use of the word vomited, because what she was doing was much more violent than any form of vomiting I had ever seen -- it just didn't seem like that accurately described what was happening for her), she continued gagging and choking and seemed to be having some trouble breathing.  Eventually she coughed up a big phlegmy ball and then seemed fine. 

I called my pediatrician, who reassured me that Susan was, indeed, fine -- he asserted that she could not possibly have food allergies, or she "would have gotten really sick" when she ate the small bit of peanut butter.  She did not develop hives, which further supported his belief that she was not allergic to peanuts.

Uncomfortable, and feeling absolutely certain that there was something else going on -- I worried.  But (as hard as it is for me to admit this now), I really did not focus on food allergies -- I worried about reflux and feared that there was something malformed in Susan's esophagus...and dreamed up countless other equally ridiculous things.

A few weeks after the peanut-butter-on-toast incident, I gave Susan a part of a chocolate Zone bar.  I was driving, and snacking on it because I was nursing her newborn twin siblings.  She asked for a piece of the chocolate Zone bar, and after reading the wrapper to be sure there were no peanuts in it (while at a stop light), I broke a piece off and passed it back to her.

To this day, I am profoundly thankful that she was as verbal as she was at that point.  Within a minute of eating a bite or two of the bar, Susan began coughing, wheezing...and then vomiting violently.  I do not do vomit well, and as I was trying to comfort her while also trying to pull her out of my van as this unfolded, it is all a bit of a blur.  But, I will never forget what she said when the worst was past:  "Mommy, it was just like when I ate the peanut butter toast."

And even though we were a pediatrician change and weeks away from a definitive diagnosis, I knew in that moment that Susan was allergic to peanuts.  What I did not know -- what I could not possible understand or process in that moment was the extent to which Susan was allergic to peanuts...and the way in which her food allergies would change her life...our lives...the ways in which, despite our best efforts, they would define us...and maybe even her.

Weeks later, I met with a new pediatrician (looking back, I am ashamed to admit that we made the change for reasons that had nothing to do with food allergies...) -- I had interviewed him over the phone and, after deciding I liked him, I had scheduled an appointment for Susan to see him for a "check-up."  During our visit, our pediatrician-to-be reviewed my children's medical history.  My twins had had some issues, and we spent a lot of time talking about physical therapy, speech therapy...occupational therapy.

And then, just as I thought we were done, my pediatrician-to-be circled back to Susan.  He must have seen something, because he asked about her skin.  In response, I blurted out, "I think she is allergic to peanuts."  She looked at me.  He looked at me.  I no longer remember what I said, but, I don't think it made sense.  

My pediatrician-to-be looked at me, and even knowing we hadn't committed, he said, "What do you mean you *THINK* she is allergic to peanuts?"  I explained -- I still remember the defensive feeling, the rush of blood to my face, words falling out of me -- as I explained that our (former) pediatrician had stated that there was no point in testing for food allergies prior to the age of three.  I remember well the look that flitted across my soon-to-be pediatrician's face before he said firmly -- "Well, I disagree.  Before you leave here today, I want you to have blood work done."  

The pediatrician did not ask me why I suspected Susan had a peanut allergy -- in retrospect, I now understand that it does not matter why a parent thinks their child has a food allergy -- merely the suspicion is enough to merit testing. 

A few hours later, my cell phone rang.  I did not recognize the number -- and as I was still in the interviewing process, I had not put the pediatrician's number in my phone.  I was surprised when the pediatrician identified himself, quickly saying that Susan's RAST for peanut was higher than any he had ever seen (it was a 78).  He wanted to know where I was, and told me that he wanted to call a prescription for Epi-Pens in to the nearest pharmacy.  He told me I should pick it up immediately.  He added that I should not let Susan eat anything until I had the Epi-Pens.  I no longer remember quite what I said, but, I do know that he clearly instructed me that Susan should not eat any new foods...and that he told me we needed a pediatric allergist.  

I remember having a hard time taking it all in -- it in a matter of a few hours, I had gone from suspecting that Susan had a peanut allergy to us needing to carry around Epi-Pens and being referred to a pediatric allergist.  

The pediatrician was reassuring, and said that he could see us the following day, if I wanted to be seen.  In a split second, I decided that he would become our pediatrician, and I told him I wanted to see him the following day.  

I remember not knowing what to think...and while I think I was at least a little bit afraid of the diagnosis of a food allergy, more than anything, I was confused and uncertain. Looking back, if I had known how serious Susan's food allergy was, if I had understood how it would impact her life...if I could have foreseen the reactions she had without ever actually consuming a peanut, I would have been terrified.

I should have been terrified.
It was only over time that I came to understand how truly frightening food allergies could be...

Tuesday, September 23, 2014

"First" Updose

I believe in the power of positive self-talk.

I was a competitive swimmer throughout high school and college and I still remember a few swims in which I believe my pre-race positive self-talk and visualization played a significant role.  

I have tried to teach Susan about positive self-talk and visualization, believing she might find it helpful in her competitive figure skating.  I think I introduced the concept too early in Susan's life, because the first time I tried talking with her about visualization, she looked at me a bit like I was crazy.  I don't think she was closed to the idea -- I just don't think she "got" it.

I have tried again off and on over the last few years to talk with Susan about visualization, and while at times she has sounded somewhat interested, I feel like the idea has not really "clicked" for her.  

The week between Susan's rapid desensitization to peanut and her "first" updose flew.  I use quotes around the word "first" because, of course, Susan DID a "first" updose back in May -- but that was before she was moved to the open-label injection arm of the clinical trial and began receiving Xolair, so, in some ways, that updose (and those that followed) didn't really count.  (Actually, when I think about those updoses in the spring and early summer -- when Susan was likely trying to consume ever-increasing amounts of peanut without the protection of Xolair, I feel in some ways like those updoses should "count" *MORE*...)

We fell into a pattern of Susan skating early in the morning and then taking her peanut dose (in what I have come to call a Smooth Monkey -- as it is a variation on Ben & Jerry's Chunky Monkey) blended with chocolate and a banana at the rink each morning.  It feels right, somehow, that she takes some of her doses at the rink, which is her home-away-from-home.

As the days sped by, and Susan's "first" updose drew nearer, I started to realize I was hearing positive self-talk from Susan about her "first" updose.  Gone were the fears and uncertainty I remembered prior to those very difficult updoses in the spring and summer...and in place of the uncertainty was a calm belief that the updose from 250 mg of peanut (a single peanut) to 375 mg of peanut (1 and 1/2 peanuts)  -- would go well.  Susan believed it so completely that I just...listened.  And soon, I found myself believing it, too.  (Ah, the power of positive thinking...)

The logic went something like this:
During the rapid desensitization, Susan consumed a dose of 120 mg of peanut and then a dose of 250 mg of peanut only thirty minutes later -- a total of 370 mg of peanut -- just about the equivalent of her first updose.  Susan was certain the first updose would be fine...and despite what I still think is a bit of PTSD (in me) from our initial efforts at rapid desensitization, I started to believe what she was saying.

For Susan, the morning of her first updose was business as usual --she skated and then attended the 504 Plan update meeting we had scheduled weeks earlier.  In the face of her tremendous success during the two-day rapid desensitization to peanut the week earlier, there was not a lot to talk about.

We sat around a table in the office of her middle school with the Principal, Associate Principal, Nurse, Social Worker, and the Associate Principal for Student Services -- a group of very busy people -- and marveled at how well Susan had tolerated the rapid desensitization to peanut.  Because we really did not have as much to talk about as we had anticipated, we talked about what the results of this clinical trial might mean for others, Susan's bravery, and (just a tiny bit) about how Susan's incredible results might impact her going forward.

We didn't hash out what might happen if Susan suddenly became nauseous...we didn't hash out what we would do if Susan was not well enough to attend school and attendance became an issue...because, thankfully (incredibly), those were not real concerns.

We agreed to stay the course.
Susan would continue to e-mail her teachers to remind them of an upcoming absence and to request information about what she would miss...and we would continue giving Susan her peanut dose at 7:30 am with the plan that I would take her to school around 9:30 am, as long as she felt well enough to attend.  

We agreed that I would let them know how the clinical trial progressed...and as I counted out the best-case scenario (with Susan updosing every week without need for extension weeks and then explained the possibility of up to six extension weeks), I was struck by the fact that some day -- some day in the very near future -- we might be able to talk about real-life changes (read:  elimination of the requirement in Susan's 504 Plan for a peanut and tree-nut free lunch table).  I felt teary-eyed.  I'm pretty sure at least one other person in the room took a deeper breath than needed...

And then we adjourned our meeting.
While we had not actually done much, we had accomplished something incredible -- we were working as a team...and Susan clearly felt supported by this awesome group of women at her school.

Susan and I grinned at each other as we left the building -- and while it felt a little strange to leave with her without her having spent even a minute in class, I don't think either of us really cared.

As we drove into the city, I marveled at how calm I felt.
I wondered why the first updose did not scare me.
(After all, PEANUT scared me -- but, for some reason, this updose did not.)

When we arrived, the nurse and doctor checked Susan out carefully -- I have come to understand just how important it is that Susan is as healthy as possible before her immune system is challenged...and then, it was time for her updose...325 mg of peanut protein -- from a single peanut to a peanut and a half...  

Just before I poured the milk into the Bullet Blender cup, I marveled at how little peanut protein powder there was in comparison to the banana and the chocolate whey...and marveled at the science behind it all -- and at the possibilities...

Susan hung out, casually drinking her updose while the machines and nursing staff monitored her vitals.  While I felt more confident about the likelihood that she would be able to tolerate this updose, I was happy that she was being closely monitored.

And then it was time for Susan's second least favorite part of the clinical trial -- the Xolair injections.  I advocated that Susan check the syringes of Xolair out before her injection, taking the position that Susan should take a minute to appreciate the medication that was likely responsible for her incredible results the day of the rapid desensitization.

She looked at them -- but, mostly just to humor me.

The only thing Susan likes less than receiving an injection is having her blood drawn, and that came next.  Over the months, I have done many things to distract Susan while she is receiving injections and having her blood drawn -- she likes it way too much when I sing (poorly), so I often try to find an appealing funny story about my childhood or my life with my husband before she was born...this time, I told her about my family's first road trip with the fishing/ski boat my father bought shortly after marrying my step-mother.  It is a good story...and she was...amused.

After the injections and blood draw were complete, I rewarded Susan with a Bejeweled lottery ticket, which she promptly set to work on.

As we were finishing up, I caught a glimpse of Susan's study notebook.  

It is always present when we are in the CRU, but, it is usually open, and I haven't ever really looked at it.  Seeing the volume of documentation that has accumulated since February gave me pause -- and I hoped that all that has been gleaned -- the good and the exceptionally difficult -- is captured within that binder.