Photo by Rebecca Gould Photography

Monday, June 9, 2014


This morning, Susan got up early.  My husband took her to the rink, where she skated for two hours.  She had a lesson with a jump coach she has come to rely upon and life was...typical.  While that might sound unusual, it is pretty typical for Susan.

I picked Susan up at the rink and we headed for the Clinical Research Unit (CRU) at Lurie, where she was to eat 45 mg of peanut protein.  That's 18% of a peanut -- not much, but, enough to give me pause.  A mere two weeks ago, Susan COULD NOT tolerate 30 mg of peanut protein...(More Questions than Answers).

While I know there is value in traditional oral immunotherapy (OIT), and while I have read enough and talked to enough doctors, advocates and parents of children living with food allergies to believe there is value in traditional OIT, I am also...scared.  IF (and that's a big "if," I know) Susan is in the placebo group, we will be attempting updoses at a frequency that is too often and at an increase that is too much for her.

IF that point is to come, when will it be?

IF that point is not to come, then why did we have such an incredibly difficult start?

As we drove to Lurie, Susan was busy completing an assignment for school, and I was lost in my own world -- turning over in my mind the questions to which there are no answers.

Things went along as usual when we arrived at the CRU.  

The red and black emergency bag was reassuringly present.

The clinical trial coordinator checked Susan's height, weight and vitals.  We reviewed what Susan's home dosing had been like (Uneventful, thankfully.  For the first time, I had very little to report.) and before I knew was time for Susan's updose.

The clinical trial coordinator handed me a prescription vial containing 45 mg of peanut protein.  

I have struggled with this -- I LIKE that i get to prepare Susan's dose in front of the clinical trial coordinators -- they trust me, and, if I were ever to do anything they wanted done differently, this approach gives them an opportunity to ask me to make a change. 

That said, even pre-measured, and in the security of the CRU, the very act of preparing Susan's dose makes my hands shake.  Having the dose handed to me, pre-measured in a prescription vial is easier, of course, because I do not have to measure (with shaking hands) and count each 1/4 teaspoon scoop, but, still.  

(Will feeding Susan peanut EVER feel normal?  Will it ever feel right?  Or will doubt and uncertainty always accompany the serving of peanut?)

Susan (vitals being closely monitored), drinking her peanut dose in a "tropical" smoothie -- frozen mango, pineapple and peach with vanilla Tera's Whey powder and milk.  Who knew you could hide a floury dose of peanut in something so yummy?  (She's SMILING.) Her calm certainty, while reassuring in many ways, gets me every time.  She so totally and completely trusts me -- trusts us...we cannot let anything bring that that trust into question...

Just as Susan finished her peanut dose, something fun happened.  Lydia, a 14-year old girl we met as the result of this blog, and her mother arrived at the CRU.  Like Susan, Lydia lives with life-threatening food allergies.  Lydia needed something special to do on Monday, and hanging out with Susan seemed like a great treat -- for BOTH of them. [They had already met once before, in Oconomowoc, Wisconsin (which is near Lydia's home).]

The folks in the CRU were very accommodating of Susan's visitors, but, it was a big day in clinical trial land, and there was more medical business to attend to first.  In addition to the peanut updose, Susan was also due for three injections of...who knows what?  Xolair?  Placebo?  Wouldn't it be SO NICE to know...

Three injections = three bandaids. was also a blood draw day.  This is Susan's LEAST favorite part of the clinical trial, by far.  At this point, I think everyone knows how Susan feels about having her blood drawn, and the clinical trial staff consistently work to come up with new ways to help her get through it.  

For this blood draw, they introduced Susan to Buzzy Bee (Buzzy is supposed to have cold wings, but, they hadn't been refrigerated.  The staff in the CRU assured Susan that even without cold wings, Buzzy Bee would help with the blood draw).  

If Susan was skeptical, I was BEYOND skeptical.  But, she agreed to try him out (what did she have to LOSE?)...

The clinical trial coordinator provided a very detailed, medical explanation of how Buzzy works.  As I cannot capture it here (and because I was curious about Buzzy ownership), I checked out the website.  Buzzy is described as "award-winning physiologic pain blocker.  Using cold and vibration, Buzzy is proven to naturally block unpleasant sensations on contact."

While we will never know whether it was Buzzy's physiologic intervention or the silly rendition of Bringing Home Baby Bumble Bee Buzzy prompted us to sing, Buzzy helped.

Lydia's mother, "licking up my baby bumble bee"

Susan didn't laugh THROUGH the blood draw, but, she was laughing by the time the bandaid was on.  (Did you know -- the nurses at Lurie BUY fun bandaids?  Incredible.)

Susan and I are going to collect fun bandaids this summer to donate to the nurses' collection in the CRU.  Did you know -- some bandaids contain latex?!  That's crazy!  (We intend to shop carefully.)

The clinical trial coordinator and I looked at the pharmacy updosing schedule and she and the doctor explained a mystery to me.  According to the schedule, after the updose to 45 mg of peanut (from 30 mg of peanut), the next updose is to "only" 50 mg of peanut.  I was confused by this, but, the doctor's explanation -- that the concentration of the doses would change at the 50 mg mark -- made good sense to me.  

Wanting to continue making progress toward the 250 mg mark (and well aware that we are now in Week 14, and need to reach the 250 mg mark by Week 19), Susan and I agreed to return to the CRU for an updose from 45 mg to 50 mg on Wednesday.  A big part of me was uncomfortable with this plan, but, I reminded myself that we would have many updoses in front of us...(and the little voice inside my head helpfully pointed out that this was a little updose).

Once the business of eating peanut, getting injections and having her blood drawn was over, Susan was ready to hang out with Lydia.  In addition to having similar food allergies, the girls both love to skate, and are avid readers.  They are kind-hearted girls whose friendships have been tested by their food allergies this year.

Look closely -- the girls are watching a movie together on Lydia's mother's iPad.  They are sharing a single set of ear buds -- I love how connected they are -- both figuratively and literally.

If you DON'T look closely, it all seems so...normal.  The girls were so comfortable just being together -- even in the CRU -- where Susan was being closely monitored after her updose.  While they were hanging out, Susan's blood pressure jumped around a little, the rashy hives on her back and chest increased and then slowly waned...

And after the girls finished watching the movie, they played Monopoly -- 

Lydia's mother and I hung out, with me watching Susan ever so carefully.  (As an aside, while I have tried to do the watching surreptitiously, she recently told the school nurse that I watch her carefully all the time these days.  Huh.  Guess I was more obvious than I wanted.)

And then, shortly before the two-hour observation window was up, I saw what I thought was a slight change in Susan's face -- a puffiness in and around her eyes, and across her nose.  It was slight -- ever so subtle -- and even the clinical trial coordinator and doctor were not sure they saw what I saw.  But, I was certain there was a change -- slight, but, still, a change.  I did not like what I saw, but, it was subtle, and eventually, it resolved, so, I tried to make myself let it go.  (But it lurked there -- lurks there -- in the back of my mind, for this is a new symptom in response to the new, higher peanut dose.)

When the clinical trial coordinator announced that Susan could leave after the two hour observation window had passed, I was not at all disappointed to hear Susan declare that she wanted to stay longer.  The delayed reactions have made her more cautious, certainly.  Susan will not use the word "scared" when she talks about the delayed reactions, but, I think the delayed reactions are particularly frightening.  How could they NOT be?  (I'll admit it:  they SCARE me, for I never know when "enough" time has passed...)

Eventually, nearly three hours after Susan took her dose of 45 mg of peanut protein, she declared herself ready to leave the safety of the CRU.  After some discussion, we decided to take Susan's friend Lydia and her mother to Zapatista for a late lunch.  I don't think she will admit it, but, I honestly believe that Susan eats at Zapatista for the guacamole (alone!).  Oh -- and maybe the Kiddie Cocktails!  

Once again, we forgot to take a picture before we dug in, so, here's what remained when I remembered to take a picture of the Guacamole of the Day, with mandarin oranges.  I don't even like mandarin oranges, but, this was INCREDIBLE.

While we had talked about manicures and pedicures at Girlfriends, we ended up taking these two book loving girls to Half Price Books -- a store the likes of which Lydia had never before encountered.  I let Susan shop the clearance cart to her heart's content and then she hit the shelves.  Both she and Lydia were stocking up on good summer reads -- and good books to read during take-two of Susan's read-a-thon (Susan's Read-a-Thon), which she abandoned part-way through due to intense fatigue.  (Date of take-two of Susan's Read-a-Thon is to be determined...)

As we were driving home from Half Price Books, Susan grew quiet.  She was ensconsed in a new book -- but, I sensed there was...something more going on.  As I questioned her (persistently, as I had an underlying fear that something really was not right), she became defensive...and I had to wonder -- was it because she had not wanted to leave her friend, because she is an 11-year-old girl...or, was there something more?  Despite her protests otherwise, I was certain there was something more going on.  And, I grew more certain when she declared (at 4:20 pm) that she thought she would skip dinner and just go to bed.  

4:20 pm.

That's what she does when she is...sick.

As I considered her plan, fear niggled at me.

I certainly wanted her to rest if she was tired, but, WHY was she so very tired? 
I did not like it -- not at all.

I tucked her in and after reading briefly, Susan was 4:45 pm.  While she was restless through the night (of this I am certain, because I was right there next to her), she stayed asleep for nearly twelve hours.

This is what her body does when her immune system is stressed.

I told myself this is what I WANTED her body to be doing...and yet, I was worried, scared, in fact, for I did not (do not) like the idea that her immune system is stressed.

As I laid in the trundle bed next to Susan, listening to her breathe through the night, I worried at the idea of an updose (even to only 50 mg) on Wednesday...checking it out from all angles, poking at the parts that worried me the most.

While the idea of an updose worried and scared me, isn't that why we are doing this?  

Yes, of course.

And while I believe in the hope the clinical trial offers Susan (and others like her), I think I just might not always like the way it makes me feel.

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