Photo by Rebecca Gould Photography

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.

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