Photo by Rebecca Gould Photography

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.


Wednesday, September 17, 2014

In My Head

I cried Monday night.

As I lay on the trundle bed in Susan's room, listening to her breath, watching her toss and turn, I felt tears pricking the backs of my eyes.  I blinked them back...and then blinked them back again when they returned. 

I am stoic.
I don't cry often...and I wasn't ready to cry.
I didn't want to cry.

I wanted to marvel in the miracle of the clinical trial -- for Susan, for us, for so many children living with food allergies...

I wanted to marvel at the result of my daughter's strength, fortitude and certainty that moving forward -- staying in the clinical trial even when it was more difficult than we could possibly imagine...

I wanted to give thanks -- to those who have fought for funding for research in the treatment of food allergies, to those who have funded this research, to those brilliant minds who have begun to tease apart a better understanding of food allergies...

I wanted to give thanks to the many brave families who have gone before us...

And I wanted to pause, for a moment, and think of those whose time came too soon -- those who never had a chance at this kind of treatment...those children and families whose stories always bring tears to my eyes...and whose stories helped me remember the importance of what Susan was doing even when it was so very hard.

I blinked the tears back again, rubbed my eyes...and then, I was overwhelmed as the tears began to fall unbidden.

I cried silently, in the dark.

My tears were a mixture of relief, gratitude and -- uncertainty.

I was -- and am -- thrilled that Susan did so well during the rapid desensitization to peanut.  On Monday alone she ate more peanut (460.5 mg -- that's nearly two peanuts) without issue than I ever dared dream she might.  Incredible.  Unbelievable.  Unreal.

On Tuesday, she did it again.

I am thrilled.
The possibilities unfurl in my mind if I am not careful...I think movies in theaters, dining out without concern -- Indian, Chinese, baked goods -- a flight (to Greece!?)...traveling without hauling along part of my kitchen...
The possibilities are endless.
The paradigm shift will be enormous.
(I suspect -- no, I am certain -- it will take time.)

But, I am by equal measure scared. 

As a friend who is a therapist pointed out (while wearing her hat!), I have spent 10 years developing neurologic pathways that say "peanut is scary."  She reminded me that those pathways will not, cannot change overnight. 

But still.

I am sure that to some, what I am about to write will sound...crazy...insane -- maybe even ungrateful?  It is not that I am ungrateful, it is that my world has been...rocked.

I remember well how I felt when I first learned that Susan was allergic to peanuts -- I was scared -- terrified -- I did not know what was safe and what was not. 

My pediatrician ordered:        "NEVER be without 2 Epi-Pens and Benadryl."
My pediatrician said:              "NEVER hesitate to use your Epi-Pen."       
My pediatrician advised:        "Find an allergist you trust and love."
My pediatrician reassured:     "You are smart, educated -- you can do this." 
My pediatrician cautioned:     "NO new foods."

I left my pediatrician's office scared, but armed with a plan.  I felt I COULD do it.  That was 10 years ago, and looking back, I now know how little I knew -- and how much I had to learn.  I am so glad that I did not know how little I actually knew at the time.  I am not sure I could have carried on had I understood the seriousness of Susan's food allergies, the vigilance and magnitude of change required to keep Susan safe...the way Susan's diagnosis with food allergies would change our lives.

(It was better that I came to a gradual understanding -- although I could have done without a few of our adventures along the way -- like our emergency landing and the anaphylactic reaction she had in the undercover dark of a movie theater while sitting next to me...).

My pediatrician's advice was sound, and I followed it.  But when Susan had an anaphylactic reaction to a part of a macadamia nut (she had BEEN eating macadamia nuts) a few days later (that I eventually learned was processed on equipment that processed peanuts), my world felt rocked. 

I feared food. 
The very act of feeding my daughter took on a whole new meaning -- and I felt it was fraught with danger.

Now, I am thankful beyond words for the very clear direction from the clinical trial.  The consents we signed state clearly that Susan is not to try any new foods at all for the duration of the clinical trial.  Not that I would be tempted at this point, but I appreciate how very, very clear it is.

While we have come incredibly far, we have also, in some ways, taken a step least in as much as I am now living in a more fearful world...Susan is eating peanut.  My daughter is eating something that could kill her -- and while this something that could kill her should also afford her some level of protection, it scares me.  Just how much protection?  And is it enough?

Tuesday, September 16, 2014

A Peanut + Retail Therapy

The day after Susan's second rapid desensitization to peanut we returned to the Clinical Research Unit (CRU) to confirm that she could tolerate a single dose of 250 mg of peanut protein.  As we drove into the city, I marveled at the fact that she had tolerated 460.5 mg of peanut cumulatively without any issue.


Even though I laid awake in the trundle bed in Susan's room much of the night -- turning the wonder of it all over in my head while also checking repeatedly to be sure she was still fine -- the reality still had not really sunk in.

As we drove into the city, I turned the idea of 250 mg of peanut over and over in my mind.  It was incredible.  And SCARY. held such incredible hope for the future -- my mind tumbled over the ways in which our life could change -- new restaurants, movies in theaters, flights...but more than anything -- maybe, just maybe -- less worry. 

A paradigm shift.
Less worry.
Less risk.
A freer life.
A more secure life.

I knew we were far, far from this...but it was starting to seem like we might get there.

I wondered -- a thought I had not had before -- would I be able to trust peanut?  Would I ever let my guard down?  Could I?  Would I ever really feel like Susan could live a freer life?  I was not sure.  I am not sure.

Feeling oddly confident about Susan's ability to tolerate a single 250 mg dose of peanut protein, we walked into the Clinical Research Unit together.  Susan was wearing all the same clothing she had worn the previous day -- I think she may wear those PB & J PJ pants and peanuty socks to every updose appointment we have...and if they make her feel good...if they make her feel more confident, I want her to wear them.

Having abandoned the idea of shopping the previous day, Susan had some big plans for our time together after we were released from the CRU.  While we had promised her school that she would attend in the afternoons after updoses whenever possible, I was not quite ready to let her out of my sight.  I was not sure how I felt about all the peanut she had eaten, and I was really not prepared to let her be anywhere other than with me.  Sensing this (and maybe wanting her own assurance that we would be together in the afternoon, Susan outlined her plan on the way into the city.) 

In the car, en route to Lurie Children's Hospital, Susan proposed we go to lunch at M. Henry.  While I LOVE it there, I would say what she loves about M. Henry is their breakfast potatoes.  While she is a kid who loves eggs, she had not yet ordered something there that she truly loved.  I saw right through her -- propose a place Mom loves and Mom is more likely to agree.  What she did not know was that she could have asked for the moon and I would have done my very best to pull it down for her...

Susan's 250 mg dose of peanut (blended with chocolate Tera's Whey powder and a banana) went perfectly.  And while there was a huge part of me that wondered how that could possibly be so, the logical, pragmatic part of me expected it to be fine (So why couldn't I quiet that panicked voice inside my head?) -- if a dose of 250 mg of peanut on top of numerous other doses had been fine a day earlier, so too should a single, free-standing dose be fine...

(Except it scared me.)
It still scares me.
Will it always scare me?

Two hours after Susan took her 250 mg dose of peanut (that's the equivalent of one entire peanut -- something that I know could have killed her once) -- we were released from the CRU.  While on the one hand, I was excited, on the other, I wondered...thinking about Susan's history of delayed reactions...and a part of me -- a very BIG part of me...wanted to ask to stay.

And yet, Susan was (clearly) ready to go.
And I did NOT want my fear to spill over on to her.

As we walked out of the hospital, I double-checked her restaurant choice.
M. Henry's it was.

We drove there in relative silence.
I don't know what Susan was thinking -- but, I was wondering -- was it a mistake to go there?  Some sort of test of karma?  After all, the last time we had been there, Susan had had a delayed reaction to the dose we thought would become her initial home dose that resulted in her vomiting on the sidewalk...(More Questions than Answers)

What was I thinking?
(Forward, onward...and above all, DO NOT LET SUSAN SEE MY FEAR.)

I held my breath as we walked by the spot on the sidewalk where Susan vomited.
She barely glanced down.
(I was struck by her confidence in me, the doctors and nurses, in the clinical trial as I fervently wished that she would not be let down...)

Safely inside M. Henry, and after some discussion, Susan ordered regular scrambled eggs with extra breakfast potatoes. 

Susan placed her order, concluding with:  "I have a severe peanut allergy.  I am also allergic to tree nuts and soy.  Please be sure the chef knows that my food cannot be cross-contaminated with peanut."

We exchanged a look.
Susan was perfectly right to place her order as she did -- we have agreed not to change anything in the management of Susan's food allergies during the course of the clinical trial...and yet, it was so strange to know that she had, in fact, just eaten the equivalent of a peanut... 

We chatted while we waited for our meal...
All the while, I was turning the idea of a single peanut over in the back of my mind...
I tried to nonchalantly scrutinize Susan, but I am pretty sure she saw through me.
(Will I ever trust peanut?)

Breakfast-for-lunch was great...
(Susan knows me well, and went for the "extra" potatoes first!)

I caught Susan's lingering glance on the dessert case on the way out the door of M. Henry.  We looked at each other.  I burst out -- "somedaySusanyoucaneatanythinginthere!"  Maybe.  Just maybe.  And wouldn't that be...incredible?

I know she thought it was goofy that I pressed her to stand in front of the dessert case, but, some day -- the day she walks in there and orders whatever dessert looks good to her -- I want to be able to show her this picture -- a snapshot in time of the land between anaphylactic to peanut (even cross-contamination) and...?

While our meal was awesome, the highlight was the shopping.  Susan had gathered up her gift cards -- Ivivva, Abercrombie & Fitch, Nordstrom's and Barnes & Noble and had some VERY definite ideas about where to go first -- Ivivva!  She received some of their clothing for her birthday, and has decided it is awesome for skating. 

Upon entering their temporary location, we struck up a conversation with the very friendly staff at Ivivva, who were curious about why Susan was shopping in the middle of the day.  (They might well have wondered about her PJ pants, too -- but, they were too polite to inquire!)  We explained briefly about the clinical trial and then talked in much greater detail about it in answer to their many questions.  We shopped as we talked, and before I knew it, Susan had picked out several great pieces -- for herself and her sister...and then -- as we were getting ready to leave, Serafina invited Susan to do a "community fitting" -- a session in which Susan would have an opportunity to try on current Ivivva merchandise while skating -- with the hope that I would allow her to be photographed and that she would provide helpful feedback.  We set a date and I found myself feeling thankful that Susan was going to have such a fun and interesting opportunity...

Susan rapidly made her way from Ivivva to Abercrombie, where she purchased denim, a darling sweater and advocated that I buy a sweatshirt for her sister's birthday (shopping with Susan was more costly than I had anticipated -- as she was busy looking out for her sister and brother everywhere we went!)...and then to Nordstrom's, where the Uggs she'd had her eye on broke her bank (I was feeling grateful to the universe, which had the trickle-down effect of making me feel generous, so I took care of the Uggs)  As we were leaving, an awesome "laser lemon" shirt caught her eye for her brother.  Tired, she decided to skip Barnes & Noble...after shyly agreeing to let me take this post-shopping spree photo!

The ideal of "retail therapy" has never really appealed to me, but I will admit that I enjoyed myself...maybe even relaxed a little...although I never stopped thinking about Peanut.

Monday, September 15, 2014

250 IS A PEANUT!!!

I hardly slept on Sunday night...the food challenge loomed large in my mind...and it was almost as though my body was trying to slow down time.  While on the one hand I have been anxious to see whether or not the Xolair made a difference in Susan's tolerance of peanut, on the other hand, I was truly afraid of the big doses I knew she would attempt to consume.  The difference between the fear and anxiety I felt before her first rapid desensitization and the fear and anxiety I felt before today's rapid desensitization to peanut was...knowledge.

I knew how it could go -- and what I knew scared me.

And I was especially afraid because I knew that of the ten doses Susan would take, the first seven of them would be small (or relatively small, because there was certainly a time when 30 mg was not small for Susan):
.5 mg
1 mg
2 mg
4 mg
8 mg
15 mg
30 mg

None of those small or relatively small doses particularly worried me, although I knew that with the cumulative dosing, by the time she took her sixth dose, she would be at a sum total of 30.5 mg, just over the dose she has been taking at home for the last three months.

I was worried about the last three doses --
60 mg
120 mg
250 mg

And I think I was more worried about those big doses than I would otherwise have been, because I felt like the fact that Susan would likely tolerate the doses up to that point might make it look like she was tolerating the doses better than she was simply because the lower doses were not really a challenge for her -- and I knew that the doses would double (or more) rapidly, meaning that she might end up eating a really significant amount of peanut even though she might not really be able to tolerate it.

As Monday approached, a number of my friends asked me how I was feeling...and I struggled to explain the mixture of apprehension and excitement I felt.  I feared that Susan would have an adverse reaction to the peanut dosing, and I found myself hoping that if that was going to happen, it would happen early on -- before we got to the really big doses...and yet, I hoped for the best...for Susan...and for the thousands of children living with food allergies whose families work to keep them safe every day.

In preparation for the food challenge, I decided we needed some "peanut power."  I have always shied away from anything that had peanuts on it (read:  clothing, novelty pillows, school supplies), but for this, I went searching for clothing with peanuts on it.  I special-ordered socks with peanuts printed all over them from Living Royal and Amelia's mother -- who wanted to send Susan with something special -- found a great pair of fleecy PJ pants with PB & J sandwiches that read "Friends Stick Together." 

Clearly ready to tell peanut that she was bigger than it, Susan happily slept in her peanuty PJ pants Sunday night and skated in her peanuty socks Monday morning.  By the time we arrived in the Clinical Research Unit on Monday morning, Susan was decked out in peanut.

Typically very easy going about almost everything in life, Susan had expressed a strong desire not to take the peanut in either the applesauce or chocolate pudding provided in the CRU.  We brainstormed other options and after trying an eggless brownie batter, raspberry refrigerator oatmeal and mashed bananas (an idea generated after a friend suggested baby food), Susan settled on mashed banana.  I had 5 bananas with me when we arrived...and I was certain that would be plenty of banana, if not too much.

We started with breathing tests to ensure her lung function was good.  (Susan always narrowly achieves the required 80% even though she has no history of asthma...I sometimes think she doesn't understand how much force is needed...and other times I think she takes the tests altogether too seriously.)  I think Susan played around a bit in an effort to release some of the tension in the room...

The clinical trial coordinators and nurses hooked Susan up to the monitoring equipment -- blood pressure, pulse oxygenation -- and inserted an IV.  Susan tried my "don't watch" approach during the IV insertion, although she remains skeptical.  

In a (pathetic?) effort to distract her, I was silly.  She was only marginally amused.  After the IV was inserted, they drew blood through the IV, which is only slightly better than a direct blood draw, according to Susan.  I joked around about vampires drinking her blood and all that...

While the nurses and clinical trial coordinators were setting up the monitoring equipment, I tried to distract myself by building a tower out of the 10 bottles of pre-measured peanut doses.  While I randomly stacked the same bottles the day of Susan's first Week 12 rapid desensitization to peanut, this time I stacked them in order -- every little bit of distraction helped.

The doctor examined Susan -- wanting to be sure she was completely healthy before beginning the rapid desensitization.  

She and I then inspected Susan's skin -- and I took pictures -- knowing from previous experience how helpful it is to have photographs from before the peanut dosing begins to compare to -- I was especially interested in the hivey rash on Susan's chest, which made me nervous (I kept thinking -- if this is how her skin looks now, what is going to happen when she starts eating peanut?!) and the flush on her cheeks...

And then, Susan took her first dose -- .5 mg of peanut protein -- at 9:45 am.  

I don't think anyone in the room was terribly concerned.  We were kidding around as I mashed the dose into very ripe banana.  The doctor, who had previously stayed in the room for every minute of Susan's food challenge went into the adjacent room (it has a window, so she could still see us...).

As the thirty-minute post-dose observation period ticked by, Susan wrapped up an assignment on her school-issued Chrome book while I sent out an update in the group text I had established for the day.  

While I was relaxed about the .5 mg dose of peanut, I was still terribly nervous about what was to come.  (I sat there, watching Susan -- who appeared relaxed -- wondering how I could be so relaxed in the present moment while also feeling so anxious about the very near future.)

At 10:15 am, Susan took the next dose -- 1 mg of peanut protein.

I began building a tower of empties.
Susan wondered aloud how high I could stack the empties before my tower fell over.  (I decided not to think too much about the possible metaphor.)

10:45 am, Dose 3 -- 2 mg of peanut protein -- more ripe banana mixed with flour-cut peanut protein.  (Yum?!)

My tower grew.

During the observation period after Susan took her third dose, which was a cumulative total of 3.5 mg of peanut protein (only about 10% of what she had been regularly taking at home), we observed that her cheeks were more flushed.  

I felt ill as I took photographs, wondering what the flush could mean...

Nothing good, I was sure.
After some discussion, and strong assurances from Susan that she was "totally fine," we agreed that the room was warm, and set the thermostat a bit lower hoping the flush would resolve.

As I was not expecting Susan to have any trouble tolerating the initial doses, this made me even more nervous -- if she looked like this after three small doses, what did the rest of the day hold?

Dose 4 -- at 11:15 am, 4 mg of peanut protein.
Susan continued to eat the peanut doses without hesitation.  I wanted to take that as a good sign, but, she has always -- even when we knew she was having a reaction -- eaten them with aplomb, so I was not sure it was really meaningful.

As the 30-minute post-dose observation period ticked by, Susan browsed/shopped on line -- gift cards from her birthday burning a hole in her pocket (Ivivva, Abercrombie & Fitch, Barnes & Noble)...and helped me place an on-line order for her sister's birthday.
And yet, I still could not relax.

11:45 am, Dose 5 -- 8 mg of peanut protein -- a cumulative total of 15.5 mg of peanut protein.  I did not say anything, but, I felt like we were getting close to what could be a precipice (and my tower was growing).

I had thought I might be able to write my blog entry (or at least the first part of it) during Susan's initial doses.  Even though she was perfectly fine, I found myself distracted, and unable to concentrate well enough to do that.  While I am usually orderly and like things to be uniform, even the way I was tracking Susan's doses was inconsistent -- dose, time, number...number, time, dose...time, number, dose...

I decided to live with the inconsistency -- I felt like it represented the way my brain was functioning...

During the 30 minutes that elapsed between Susan's fifth peanut dose and her sixth peanut dose, we considered the remaining bananas (dwindling to 2) and the likelihood that she would need more banana to mix into the remaining (and growing doses).

As Susan needed to take her remaining doses in banana (consistency), we had limited options:
1)  Decrease the amount of banana we were using
2)  Obtain more banana

The answer was clear -- obtain more banana.  But how?  I was pretty sure if I walked/elevatored myself down to the cafeteria I would find bananas there, but there was no way I was leaving Susan...and everyone in the room understood that.

That left food services.  Our only experience with food services from Lurie Children's Hospital involved frozen soy-free cheese and a (cold) baked potato -- we remembered how limited Susan's options were when they took her allergy profile into consideration and how unappealing the ultimate offering was (no fault of food services -- simply the way it was, I think...).  Susan and I eyed each other.  

Surely, surely they could provide us with a single un-peeled banana?  The staff in the CRU had some doubts too, but I reminded them that we had some time before we would need more banana and so the order was placed. 

12:15 pm, Dose 6 -- 15 mg of peanut, a cumulative total of 30.5 mg of peanut.  I knew that this was the dose that could be the tipping point, as the cumulative total would exceed Susan's daily home dose of 30 mg, but I was not truly concerned about this dose -- it was the ones to follow that scared me.

My tower of empties grew.
We examined Susan's skin -- she was not so into being scrutinized -- and who could blame her?  I think we were all relieved when we were able to conclude that Susan's flush had (mostly) resolved.

12:45 pm, Dose 7 -- 30 mg of peanut, a cumulative total of 60.5 mg of peanut.  This was the last of the doses that did not really, truly scare me.  Sure, it was big -- but, in reality, it was the same dose Susan had been taking at home for three months -- it had become "a friendly dose."  

Susan did not seem at all concerned as she took the dose.

As I stacked the empty prescription container from Susan's seventh dose atop my tower, my hands were shaking.  I moved the three remaining full bottles so that they were next to my tower of empties.  

1:15 pm, Dose 8 -- 60 mg of peanut, a cumulative total of 120.5 mg of peanut.  This dose scared me.  While I knew in the back of my mind that Susan was tolerating the doses better than she had during the initial rapid desensitization to peanut in May, I was still worried. 

It both helped and hurt that the doctor and clinical trial coordinators returned to sit in Susan's room just before she took her eighth dose of peanut protein.  I appreciated that they were right there with us...and I was concerned because I felt their behavior underscored and validated my concerns...

If Susan was worried, she did not let it show as I stacked the eighth empty prescription bottle atop my slightly wiggly tower of empties.

My biggest fear was that with the doses that would double, Susan would have an intense reaction without the warning signs the smaller doses had allowed for in the past.

1:45 pm, Dose 9 -- 120 mg of peanut, a cumulative total of 240.5 mg of peanut -- almost an entire peanut across the course of the day.  This huge dose -- nearly half a peanut -- scared me.  A lot.  

Just as I was preparing to skimp on the banana that remained, someone from food services arrived with a banana on a tray, which she delivered with a flourish.  I wish I had captured the moment!  

Thankful that we now had plenty of banana, I took a deep breath and mixed waiting peanut dose into the mashed up banana.  While it did not look appetizing, Susan assured us all that it was better than it looked -- and far better than taking it in chocolate pudding or applesauce.

Susan started in on the ninth dose without concern.  

But the peanut-flour to banana ratio wasn't acceptable!
After we added more, she finished off the 120 mg dose of peanut protein and we settled back to wait.

And wait.

With trembly hands, I added the ninth empty prescription bottle to my tall tower of empties.

As we waited, I started to allow myself to think that maybe -- just maybe -- this had worked.  Susan had eaten a cumulative total of 240.5 mg of peanut -- that was nearly one whole peanut.  I was cautiously optimistic that she would tolerate the dose -- and maybe, just maybe she would tolerate the 250 mg dose too?


2:15 pm, Dose 10 -- 250 mg of peanut, a cumulative total of 460.5 mg of peanut -- almost TWO entire peanuts across the course of the day.  I had tremendously mixed feelings as we prepared this last huge dose for Susan.  On the one hand, it was incredible -- and not just for Susan -- but, on the other hand...she has a history of significantly delayed reactions...what if a giant, horrible (unstoppable?) storm was brewing in her body?  

I wanted to believe that science and persistence and determination had accomplished something incredible, but...I was not ready to let my guard down.

I smashed up the banana, and as I prepared to mix the peanut protein into the cup I caught a whiff of peanut.  I had a visceral, physical reaction and for a split second, I did not think I could give it to Susan.  Even though I knew Susan was committed to seeing the clinical trial through, the huge single dose of peanut -- that actually smelled like peanut -- gave me tremendous pause.  Was I ready?  

Susan was SAYING all the right things as I handed her the cup containing her tenth dose of peanut protein -- the equivalent of a single peanut.  But now, when I look back at the photos I took of that moment, I see a look of concern that must have been fleeting -- an uncertainty Susan hid well, and which I did not see at the time.   

As Susan finished off the tenth and final dose of peanut protein, I was thankful that she was in such an incredible facility and that she was being closely and carefully monitored. I liked seeing the red glow of the pulse oxygenation monitor through her peanuty sock -- 

After sitting for a few minutes -- absorbing what I thought might (hopefully) be a life-changing paradigm shift... 

I carefully stacked the tenth empty prescription bottle atop my tower of empties and hoped it would stand.  I felt like there was a metaphor in my tower, which Susan wanted to blow down after her two-hour observation period had passed.  I hoped the tower I had built was strong enough to remain standing for two hours...and I hoped that in two hours, Susan would be feeling well enough to blow it down with gusto.

Thirty minutes into the two-hour observation period, Susan -- who had read and then played games on her phone as the doses doubled -- broke into her GoPicnic -- ready for "real food."  I wondered how "real food" would be on top of 6 bananas and nearly 2 peanuts...and was just fine.

As the minutes ticked by, I sat there, watching her.
Occasionally, she looked up at me -- we shared a look -- a smile...hope.

As much as I wanted -- with every shred of my being -- to believe in the power of Xolair mixed with courage and determination -- I was afraid to trust it completely.

My thoughts spun about wildly.  One minute I was thinking about peanut butter cups, lunchroom freedom and international flights -- marveling at the paradigm shift in our family's future and then next I found my stomach clenched with anxiety -- thinking "what if?"

I could not wrap my head around it at the time -- and I'm still not sure I have.

As we neared the end of the two-hour observation period and Susan was "totally and completely fine" I tried to relax.  She wanted to go to dinner at Maggiano's and to spend those gift cards live.

But first, there were a few things that required her attention:

-- My Tower of Empties...

...and removal of the IV (I was trying to make her laugh!):

As we walked out of the room where much of my tension-filled day had passed, I glanced back, my eyes lingering on the red emergency bag -- nicely zippered shut.

(A far cry from the way it looked after Susan's first rapid desensitization to peanut...)

I think we were exuding something -- relief, maybe -- or joy -- as we left the hospital because no fewer than three people inquired if we had had an appointment at the hospital that day (maybe Susan's PJ pants gave her away?) -- in all of our weeks and months of visits, we have never had anyone strike up such conversation with us.  And while I am fairly likely to strike up a conversation in an elevator, I have never asked such a personal question while at Lurie Children's Hospital -- as I am intensely aware that there might be a very painful answer. 

As we headed north, creeping through rush-hour traffic, I felt only relief that we were headed home...that the day had gone better than I ever dared hope it might (for very, very few children have gotten all the way to 250 mg of peanut protein during the rapid desensitization without any issue). 

Susan and I enjoyed dinner at Maggiano's Little Italy -- a Lettuce Entertain You Restaurant we have come to trust.  Even though many of the waiters and waitresses recognize us, the chef always comes out to discuss Susan's order and to assure us personal oversight of the preparation of her meal.  Susan is so comfortable there (and was so pleased with the power of her peanuty PJ pants that she wore them into the restaurant!).

This time, the chef asked if we were celebrating something (like I said, there must have been something about the way we looked...).  Susan and I looked at each other and I blurted out -- "shesinaclinicaltrial for food allergy research andsheatea PEANUT!"  As comprehension dawned, the chef broke into an enormous smile.  I hastened to explain that nothing could or should change in her order.  He assured me it would not. 

Dinner was great...
We were quiet, tired...and over dinner, we decided to shop the following day.

But the beautiful dessert (complete with a "puzzle apple") the chef prepared for Susan himself was...incredible.

I have to admit...we were quiet during our meal...far more so than usual.  I think we were both lost in our own thoughts -- for how does one talk about a miracle? 

Maybe the thankfulness, the awe, the in the silence.