250 is Just a Number.

As is 30.
And 180.
And lots of numbers in between.

Today was a big day in clinical trial land.  And, for those of you who are keeping track, this is Week 12.  (This actually matters later, it turns out -- quite a bit, in fact.)  

The drive in was torture.  It took us 2 hours and 27 minutes.  Even my smart new navi could not find us a good route.  I was nervous.  Susan was not -- at least not that she was admitting.  She snuggled into the back seat with her lovie (Ga), her baby blankie (they sort of go together) and her pillow.  She played games on her phone and read...and while she was not talking about it, I knew -- by the very fact that Ga and baby blankie were along for the ride, that some part of her was...uncertain...

The clinical trial visit began as usual -- height, weight, vitals, etc.  But, there were some differences in the way the room was set up for this visit.  I immediately saw (and was reassured by) the presence of the black and red emergency bag.  I also noticed some of those hospital basins -- I don't know what all they are used for, but, vomit was the first thing that came to my mind.  I averted my eyes.  Remember -- I DON'T DO vomit.  I also saw stacks of towels, and a blanket...and a large paper bag with a prescription label on it...and several containers of chocolate pudding (Susan's choice).

The nurses on the Clinical Research Unit helped Susan get comfortable in a reclining chair.  They inserted an IV using the pop-top fizzy device, which Susan prefers (they remembered this -- they are so awesome!), drew blood, placed the blood pressure cuff and after a bit of a discussion which revealed that Susan was unwilling to give up use of any of her fingers (for the pulse ox), they suggested using a toe.  As toes aren't required for the playing of Fruit Ninja, this was a perfectly acceptable plan.

Before beginning, the clinical trial coordinator checked -- did we have Susan's Epi-Pens with us.  OF COURSE.  Was I so thankful she checked -- ABSOLUTELY.  Did I have a moment of thinking -- She's not supposed to get sick today?  Yes.  Yes, I did.

Today, after having a total of 18 injections over the last twelve weeks, Susan was presented with 250 mg of peanut protein (in 10 incrementally increasing doses).  The goal was that she would be able to tolerate consumption of the entire 250 mg of peanut protein without having a reaction.  That's ONE WHOLE PEANUT.  To put this in perspective, Susan began showing significant signs of a reaction after consuming half of a dose of 25 mg of peanut protein during the food challenge at the outset of this clinical trial (One Day, Two Food Challenges).

Just for fun, we stacked them into a haphazard tower.  

If you look carefully, you will see that they are very clearly labeled, with the dose number and the amount of peanut protein therein.  While we stacked them randomly, there was NOTHING random about the dosing for the day -- each of those bottles held a very carefully measured dose of peanut protein which was suspended in a flour, the entirety of which was mixed into chocolate pudding.  

As the clinical trial coordinator mixed the first dose of peanut protein into the chocolate pudding, she began talking to me about the specifics of home dosing, reviewing the types of things we could mix Susan's dose into...and the reality of what we are about to do hit me -- hard.  It is one thing to sit in the Clinical Research Unit while Susan eats peanut...watching ever so carefully along with other medical trained professionals for the first sign of a reaction...

...it is something else entirely different to think about having Susan eat peanut at home.  The enormity of my responsibility in this is...staggering.


With all that swirling through my mind, we began.  
I reminded myself that the home dosing instructions were not for today.
Or even (thankfully) for tomorrow.

And I focused on Susan, and today.

Ten doses.  That's a lot of doses.  And a lot of chocolate pudding.  And, with dosing at 30 minute intervals (with the option of delaying a dose if there were signs of reaction present), I knew we had a long day in front of us.  

With four of us watching (me, two clinical trial coordinators and one of the study doctors), Susan spooned the first dose of that potentially deadly mixture into her mouth calmly.  As I watched her, I marveled at her calm, at her trust.  

The doses were tiny at first, and, really, relatively easy.  It did not take a lot of chocolate pudding to mix the dose well and Susan felt fine.  At first.


9:55 am:  Dose One.
.5 mg of peanut protein -- that's 1/500 of a peanut, or less than .2% of a peanut.  (And yes, that decimal place is in the right place -- I checked with a very smart friend just to be sure -- thank you, Kristin.)

Susan -- who has unrestricted gaming on clinical trial days was happily playing Fruit Ninja, Bejeweled, and Toy Balls (a game we used to play all the time that we sort of forgot about).  Her lovie, Ga, was hanging out with her.  


10:25 am Dose Two
1 mg of peanut protein -- that's 1/250 of a peanut, or about .4% of a peanut.

After Dose Two, Susan continued enjoying her unrestricted gaming.  And, I couldn't resist a tower of empties (read:  completed doses):

I've had several people wonder what we DO while we are at the clinical trial appointments -- especially those that are lengthy in nature.  Let me tell you -- while I try to stay in touch with those who are closely following our visit by text message, photo and or e-mail, what I am REALLY doing during those visits is...watching.  

I have come to really trust the women running this clinical trial.  They are kind, compassionate, thorough and very, very smart.  They see Susan as a real person.  They are interested in her beyond her food allergy profile.  They care about her.  That was especially evident to me when Dr. R., who was attending the food challenge, watched the video of Susan's remarks at the FARE luncheon a few weeks ago.  Like me, she cried.  But, she's not Susan's mother -- she's (just) her doctor.  

As much as the doctors and clinical trial coordinators care about Susan, I know her best.  If she is going to have a reaction, I am the most likely to spot the first sign of it.  MY job during these clinical trail appointments is to watch ever so carefully. 

10:55 am Dose Three
2 mg of peanut protein -- that's 1/125 of a peanut, or about .8% of a peanut.

Susan did not report any changes after consuming the third dose of peanut protein, but, I noticed that her blood pressure was bouncing around a bit more than it had been...and I thought she started to look ever so slightly red in the cheeks, but, I wasn't sure...and so, I just...kept watching.

And yes, for those mathematically minded who are reading this, the dosing is cumulative, so, if one wanted to play with the math on this, one could -- by Dose Three, Susan had consumed 3.5 mg of peanut protein, or 1.4% of a peanut.  The problem with playing with math like this is that it is hard to know how much of the peanut protein was just hanging out in Susan's stomach and how much of it was being digested...but, there's the math, nonetheless.

11:25 am Dose Four
4 mg of peanut protein -- that's 2/125 of a peanut, or about 1.6% of a peanut.

I could see that Susan's blood pressure was bouncing around a bit, and it was clear by this dose that she was having some skin changes.  Susan was continuing to enjoy her unlimited gaming between doses, and at times, when we checked with her to see how she was doing, I felt compelled to remind her to pause in her game playing and actually thing about how she was feeling.  She doesn't complain, so, we were asking her to do something outside her norm -- and I wanted to be sure that she gave the very important question of how she was feeling a truly considered answer.

At regular intervals, Susan reported that she felt "fine."  

And then, just as the clinical trial coordinator and I were exchanging looks (for we could see the bouncing blood pressure and the skin changes), Susan reported that her stomach was "not feeling quite perfect."  She's stoic, but, we're SO on to her.  

We talked about how her stomach was feeling at length -- by then she had had the equivalent of more than three cups of chocolate pudding and not much else.  Was she hungry?  Did she want to take the rest of her doses in applesauce?  Maybe.  And NO.  I was right there with her -- the idea of applesauce on top of chocolate pudding wasn't very appealing to me, either.  Susan assured us that she was fine to continue.

Through this all, I have been amazed by her calm in the face of what is, essentially, poison to her.  Even when not feeling well, she is still willing to go forward, because...because why?  She trusts us.  She does not want to live like she does.  She believes in the science behind this.  She wants to be a part of the cure.  Staggering, really.  I am sure there are some children who would simply refuse to eat more -- or to do this at all.

With Susan's stack of "empties" growing, we pressed on:

I was impressed with how far Susan had been able to go, but, growing nervous, too.  If she was already showing signs of reacting with an 4 mg dose, would she really be able to get to a 250 mg dose?  I did not voice my concern (although the clinical trial coordinator and I shared plenty of looks) and I told stories Susan has never heard about my childhood to distract (me AND her).  


11:55 am Dose Five
8 mg of peanut protein -- that's 4/125 of a peanut, or about 3.2% of a peanut.

After her fifth dose, Susan asked for the lottery ticket we bought on the way to the CRU. Bad parenting, I know.  To explain, we have talked about how -- at least for us -- being in the clinical trial feels like winning the lottery, so, some mornings we stop to buy a lottery ticket to play while we are at the CRU.  This morning, before I had any idea how bad traffic would be -- and how late we would be as a result -- we stopped for gas.  And, as Susan was checking out her lottery ticket options, she spotted one that is a take-off on her current favorite game, Bejeweled.  How could I resist?  Anyhow, she played her lottery ticket between Dose Five and Dose Six.  (And I told myself that if she felt well enough to want the lottery ticket, that was a good sign...)  

As Susan scratched off her lottery ticket, I noted that her blood pressure was definitely up.  And if you look, you will see that her cheeks were red, and a bit blotchy -- clear skin changes.  Susan reported that her stomach still did not feel "quite perfect," but, she was willing to go forward.  

With our stack of "empties" growing, we pressed forward.  

12:25 pm Dose Six

15 mg of peanut protein -- that's 3/50 of a peanut, or about 6% of a peanut.

With a calm resolution that I think impresses everyone who has come into contact with Susan during this clinical trial, Susan ate the sixth dose of peanut protein in a few big bites.  

As the thirty minute observation period ticked by, I noticed that Susan was less interested in gaming...and remembered from the food challenge that she stopped gaming when the reaction began to increase in intensity.  She wasn't reporting anything different -- her stomach still did not feel good (she rated it a 2 on a scale of 1 to 5)...and I could see increased evidence of skin changes (she was redder...and I think I saw a few hives...and maybe some puffiness)...and her blood pressure was holding steady in the "up" range.

As I watched Susan eat the sixth dose, I started thinking hard about the reality of home dosing.  I had always understood that we would need to make some changes in our busy lives in order to ensure Susan took the dose early enough in the evening that we had a two-hour observation window before it was time for her to go to bed...and I knew she would need to have a parent with her at all times, but, the reality of what this could feel like to do at home was starting to frighten me -- just a bit.  And, a bit like Susan, I don't scare easily -- so this is a BIG admission.

12:55 pm Dose Seven

30 mg of peanut protein -- that's 3/50 of a peanut, or about 6% of a peanut.

After she finished the seventh dose, Susan put down her phone.  Her stomach was still bothering her.  She wasn't sure if she was hungry (entirely possible, as she hadn't had much to eat other than chocolate pudding), or if there was more to it than that.  I was pretty sure it had something to do with the peanut protein we kept sending its way...

We waited.
Susan assured us she was no worse than before...
and we waited some more.

And as the minutes ticked by, I eyed the remaining doses warily...  

60 mg
120 mg
250 mg

They are all just numbers, right?
Right.
But...I kept thinking about the effect of the cumulative dosing, the dramatic increase in each increment and the symptoms of reaction we were already dealing with...

And yet, even as I kept telling myself that they were all just numbers...

If I am totally honest, I will admit that the three remaining containers scared me more than the tower I could have made of the seven empties.  For sure.

12:55 pm Dose Eight

60 mg of peanut protein -- that's 1/10 of a peanut, or about 10% of a peanut.

As Susan ate the eighth dose, I was feeling torn.  This was incredible progress, right?  She was eating peanut.  But, I really didn't like the way she looked, and I was worried...

I wasn't even thinking about home dosing at that point -- I was just thinking how very, very hard it was to watch Susan eating something I knew could kill her.

As the minutes ticked by, Susan reported that her stomach was feeling "not as good" as it had been.  And, as it hadn't been feeling good before, that was really concerning.  After some discussion, it was decided that the ninth dose (120 mg of peanut protein!) should be delayed.

Susan's discomfort increased.  
All gaming stopped.

We could see evidence of more skin changes.
And her blood pressure and pulse were most definitely up...and climbing.

I couldn't just sit and watch any longer.
Even though it made it harder for me to watch her, I climbed into the reclining chair with her.  I wanted to be closer.  No, I NEEDED to be closer.

While nothing ever really felt out of control, I was constantly aware of the dangerous edge we were walking.

As Susan's reaction continued, the team decided to administer 41 mg of Benadryl IV push.  

That's a pretty intense way to get Benadryl...and it knocked her out.

Once Susan started reporting more significant signs of reaction, I was less able to keep really good track of the timing of things...so, I'm much sketchier on the details about time and the like from this point forward.

But, I do know this.  While Susan rested, the doctor and clinical trial coordinator explained to me that, according to the protocol, if the Benadryl helped and Susan felt able, they needed her to attempt to take the next dose of peanut protein.  

120 mg

I was stunned, but, tried to control my emotions -- Susan has been very clear from the beginning that this is not just about her, and -- if the study protocol called for an additional dose, I wanted to allow her to try it...if she wanted to.  And...I was pretty sure she would want to.

But...by then, I was scared.  As I watched her, I found myself thinking that there was NO WAY we would be able to manage the home dosing -- it was too scary, the symptoms were too intense...the risks were -- simply, too (way, way TOO) great.

Time passed...and the team eventually announced that if Susan was going to attempt the next dose, she needed to do it.  They roused her, we explained, all the while a lump in my throat -- (wondering whether or not I was, in fact, being the best possible parent to her at that moment)...and she agreed to attempt the 120 mg dose.  

And a voice inside my head was pretty insistently saying, "SHE DOES NOT HAVE TO."  And yet, if this is not all about her (as she clearly and repeatedly has said it is not), then she almost did have to.

?? Dose Nine

120 mg of peanut protein -- that's about half of a peanut.  (Staggering.)

After some discussion, the team decided to have Susan start with half of the 120 mg dose, which essentially meant that she repeated the 60 mg dose...  

A sleepy Susan gamely spooned the 120 mg dose into her mouth (I don't have pictures -- I wish I did, for stamped in my mind's eye is how unwell she looked in that moment...and how resolute she clearly was).  And then, with alarming speed, Susan stopped eating, and -- on the verge of tears -- said she was going to throw up.  

She vomited. 
And she vomited...
And she kept vomiting.

For those of you who haven't been along for the whole ride, I *DON'T* do vomit, but, I gamely hung in there, hugging Susan and assuring her she would be okay -- wanting to be certain she did not allow fear into our space if at all possible.

After she was done, she laid back in the reclining chair and started to drift off.  I exchanged a look with the doctor, who quickly told Susan she had to stay awake.  We forced her to talk to us, and within minutes, she was complaining of feeling like something was "stuck" in her throat...at first she thought it was just from the vomit, but, as it rapidly worsened instead of improving, it was quickly clear to all of us that vomiting had not stopped the reaction (sometimes it does, although that hasn't been the case for Susan in the past).

I got to find out what was in that big red emergency bag...  

...Epi Pens, and assorted pre-measured IV-ready medications (among other things...that I'm surely thankful I did NOT see!).  

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.    

It was then -- as the clinical trial coordinator and nurse tidied up the space and the doctor made notes that the enormity set in for me.



I was cold -- ever so cold...and shaking uncontrollably.



As I sat there, hugging myself, I couldn't help but wonder if we really want this that much.  For the truth is, no matter what happens, there IS a price to pay.


Turning that over in my mind, I climbed into the reclining chair with Susan -- wrapping her in my arms, holding my brave, brave girl securely.  Even though her vitals were being carefully monitored, I wanted (needed) to be right there with her.  As I stroked her hair and listened to her breathing, I marveled at her stoic bravery -- at her determination to see this through.


Hours later, after examining Susan at regular intervals and having her eat something (Oreos and milk -- a slight improvement over the pudding from earlier in the day) the doctor sent us on our way.  We left bearing more snack packs of Oreos (Susan actually looked at me for my permission before accepting them -- and all I could think was like I would deny you ANYTHING at this point?) and a large hospital tumbler filled with water. 

I had a number -- 180.  That's 180 mg.  Best calculation (guess?) was that Susan had ingested 180 mg of peanut protein before having a full-blown anaphylactic reaction.  Of course, that was a cumulative dose...and she vomited up a tremendous amount of peanut protein and chocolate pudding.  (And YES, I know, I DON'T DO VOMIT, so, I just might be exaggerating, but, EVEN the doctor and the clinical trial coordinator noted that she had vomited "a lot.")

We were sure Susan was dehydrated, and, knowing that we (UNBELIEVABLY) were going to be back in the CRU the following day to try to confirm Susan's ability to tolerate a home dose of 30 mg, we all wanted to get Susan to the best possible place physically.

Susan was so tired that all she wanted to do was sleep more -- that's what a massive dose of Benadryl and a full-blown anaphylactic reaction will do to you -- but I tried to get her to drink a few sips of water every so often.  And then, she needed a bathroom stop, and even though we were only about 12 minutes from our house, I was not going to deny her anything at that point...so, we stopped at a Thornton's in Highland Park (yep, we were THAT close to home!)

Enter the best thing of Susan's day (at least until that point):
  

Never underestimate the power of a Slurpee.  (Actually, this was a Freezee, but, still...)  It is clear, she is wiped -- pale, with circles under her eyes...but, she mustered a smile, saying "this will be good."  She was more right than she knew.

Fluids.
Sugar.
Fluids.

And all of the sudden, Susan was ready for dinner.  Not Zapatista, but, Michael's -- for a cheese potato.  I'd have let her eat anything she wanted (as long as there was no peanut involved!).

We stopped at Michael's Chicago Style Red Hots in Highland Park.  While it might seem a strange choice for a vegetarian, and I was once skeptical of their ability to handle food allergies, over the years, we have become loyal customers.  While they have a wide array of salad toppings (some dangerous for Susan), they will make anything we order using ingredients that come from their original containers, in the back, on a sanitary work surface.  They understand my paranoia about the microwave, and never "cook" our potatoes...and so, dinner was a cheese potato -- both kinds of cheese, please -- oh, and not cooked.  And while I feel the need to remind them every time, enough of the staff in their know us that I honestly believe I could stand there and not say a word and they would still get it right.  Pretty incredible.

And then, because we had missed most of an incredible day, and I wanted to offer Susan something special (the moon, really, had I been able!)...I hauled the cushions for our "green chair" (a double-wide, incredibly comfortable chaise lounge) out of our basement and set it up for Susan...who ate her potato there, talked of reading to Amelia there some day and then read her own book until she was ready for bed.

And now that one of the longest days of my life is over, and I have reflected some, I can say this:


I want this for her -- badly.
Even now.


I will not let my fears and misgivings get in the way.  
For, if possible, Susan wants this more.
She said as much as we stood in line at Michael's.


And a tiny, insistent little voice in the back of my head wonders why Susan wants this SO MUCH...allowing my fear that living with food allergies -- despite all we do to make it NOT about the food...is way more terrible than I can even imagine...

Tomorrow: To eat (a) PEANUT?

So...

As a parent I do a lot of things.  I read to my children, I pack lunches, we host play dates and I schedule activities...oh, and I drive (rather a lot).  I try to be their best advocate while ensuring that I see my children as individuals with their own separate strengths and weaknesses.  I try to teach as I go, and to connect with each of them at various points in the day...recognizing that they each have their own unique personalities, needs and "best" times of the day.

I am up with Susan at 4:50 almost every morning.  We cuddle.  I make her breakfast...and I sit with her while she eats.  It is "our" time.  I make a point of being present for Meg from the minute Susan and Paul walk out the door to go to the rink until the minute Meg gets on the bus or I drop her off at school (Carl squeezes in there, too -- although as a late-to-bed, late-to-rise kind of kid, he is usually on a tear!).  I make a point of listening to Meg practice her violin most days...and I carve out time (even when I am so tired and DONE with being a parent that it is the LAST thing I want to do) at the end of the day for Carl, who is at his ABSOLUTE best then.  

There was a time when I thought a lot about my parenting goals, philosophy and the like.  I think I even read some books on the subject.  At this point, I do not think about those things that often -- while there are CERTAINLY areas in which my parenting could improve (I probably speak for all parents out there), most of what I do is ingrained at this point in time.  (Yes, even the occasional loss of patience...)


I have been busy today...but, in the back of my mind, tomorrow has loomed -- ever-present.  I find myself wondering about my role as a parent in the plan for tomorrow.  I find myself thinking of the parents we know who faced heart-wrenching decisions about their son's medical care -- eventually signing consents to allow the treatment they believed would give him the best possible chance...and I wonder -- are we (am I) right in the decisions we have made leading up to this day?  Is it ever clear?

We sought out a clinical trial for Susan.  We felt (feel) fortunate to have been offered a spot...and we were thankful when Susan was enrolled in the PRROTECT clinical trial at Lurie Children's Hospital.  This is exactly what we wanted...right?

Right.
I think...

Tomorrow is the day that Susan will be presented with 250 milligrams of peanut protein (broken into a number of smaller doses over the course of the day)...with the hope that after a series of injections (with either Xolair or a placebo), she will be able to tolerate consumption of that much peanut protein.   

[That is (approximately) one whole peanut, by the way...and about 20 times what Susan consumed at the outset of the clinical trial -- the consumption of which resulted in a delayed anaphylactic reaction later that night...]


The sane, rational, clear-headed part of me says:
-- This has been done before (but not with my child)
-- There has been documented success (but not with MY child, at least...not yet)
-- This will be in a clinical setting (BUT they told us to bring our Epi-Pens...)
-- This could be incredible (but WHAT IF it is not?  I read that consent...and who needs to fly?)
-- This is what Susan wants (but WHY?  And isn't it OK enough even as it is?  No, NO.  I know it is not good enough as it is.  And if I need convincing, I only have to listen to her remarks at the FARE Luncheon -- In Susan's Voice)
-- This is for the greater good (and so please, please dear universe, remember that this is MY child...)


As a parent, all I can do is my best.  I do not know what tomorrow holds, and I am...afraid.  (Is my best good enough?)


I am afraid of what tomorrow will bring...
And I am afraid of the tomorrows beyond it.
I am so incredibly afraid of home dosing -- and yet, we will do it -- exactly as instructed.
Because my wish for a better future for my daughter is stronger than my fear.
But, that doesn't mean I am not afraid.  
What if, in our desire to make things better for her, we make things...worse?
And -- irrationally, probably -- I am afraid that someone out there will think "oh, she's not allergic any more..." (which could have devastating consequences...)


For years, we have avoided peanut -- cross-contamination, dust, even airborne exposure -- and now, as Susan's mother, I am going to sit with her -- supporting her, encouraging her, ENDORSING her...consumption of peanut.  Insane.  Incredible...and hopefully, hopefully, so worth all the fear, all the anxiety, all the...risk.

Last Injection-Only Visit

It was a gray and rainy morning, and I had a bad feeling when I pulled up the address of Lurie Children's Hospital on the navi in my new car -- it is "smarter" than the navi in my former vehicle, which sometimes means -- especially when there is traffic -- that it has to think a bit "harder" [read:  I watch it while it calculates many possible routes before eventually settling on the "best" (read:  fastest) route].  I had a moment when the navi settled on a route with an arrival time of 10:33 am.

I was sitting in the parking lot at Centennial Ice Arena and it was 8:36 am.  Susan and I were due at Lurie Children's Hospital at 10:00 am for the last of her injection visits.  Week 11, Visit 10.  While they staff in the Clinical Research Unit (CRU) are very accommodating, and work hard to ensure that the scheduling of visits works in our calendar, I hate the thought of being late for an appointment there.  I continue to feel tremendously fortunate that Susan is in this clinical trial and it seems every so wrong to be late.  That's on me, I know.

Knowing things could change, and hoping for the best, Susan and I set off.  Shortly after we left the rink, my navi informed me, "Traffic has changed.  There is an alternate route with an arrival time that is X minutes faster.  Would you like to take the new route?"  I have to write "X" because I no longer remember how many minutes faster the first new route was -- I can only say that my navi offered us new routes most of the way into the city, shaving a few minutes off our arrival time each time.  We took a route I would be hard-pressed to recreate, and were on city streets I have never traveled before (coming for a social worker who has spent her entire 20+ year career in the field, that is saying A LOT).

Feeling grateful for my smart new navi, we arrived at Lurie at 10:01 am.  I suggested that I drop Susan off outside the main entrance to the hospital so that she could go up and get checked into the CRU.  We have done this before when we have been pressed for time, and while she has done it successfully (don't be alarmed -- I would never have suggested she do it alone without having done it several times with her first), it is not her favorite thing to do.  I am continually struck by the dichotomy between her what I know her public persona can be (competitive figure skater, compelling public speaker) and the quiet, shy and reserved 11-year old present most of the time.


Wanting ever so much to respect Susan and to make this visit as easy for her as possible, I agreed that we would park in the garage together, cautioning her that we would need to move quickly once we were parked.  (I was moving so quickly that I forgot to make note of what floor we parked on -- and after having parked there multiple times, that IS a real problem...fortunately, Susan remembered -- so glad I kept her with me!)
As we power walked to the elevator, and then from the elevator across the pedestrian sky bridge and into the lobby and reception area of Lurie Children's Hospital, I was struck by how familiar the hospital has come to feel -- and took a moment to be grateful that the reason the hospital no longer feels foreign, strange and way, way too big -- all things it felt the first few times we were there -- is one of hope...and I offered up a moment of positive thoughts for those whose stories are...different.


As we navigated what has now become familiar, taking first one elevator and then another, transferring at the eleventh floor to the elevator that would take us to the CRU on the 19th floor, I shared my observations with Susan -- asking her if she remembered what it was like on our first visit.  I was thinking back to the combination of hope and nerves I felt (what if she was not actually a good fit for the clinical trial, and therefore, not accepted for some reason?) and I wondered if my first-time experience of the hospital was magnified in some way by all that emotion.  Probably so.  

The staff in the CRU greeted us.  They know us and welcome us.  While we still wear badges, I don't think anyone in the CRU would notice their absence at this point.  As I pondered this, I was struck by the idea that this place of research -- a combination of science and hope -- has become familiar and comfortable to us.  While I honestly and truly believe there IS value in Susan's participation in this clinical trial even if nothing changes for her, when I am brutally honest with myself, I will admit that I don't really believe that nothing will change for her.  In my heart of hearts, I believe this clinical trial will changes things (even if only in some small way) for Susan.  I think that might be the definition of hope.  Or maybe optimism.  I'll take both given what comes next week...  

Week 11 is an odd-ball visit, breaking the every-other-week pattern to which we have grown accustomed.  The clinical trial coordinator joked that they wanted to be sure Susan had as much Xolair on board as possible before next week, when she will hopefully be able to eat the equivalent of one full peanut (in many small doses).  We all know we have no idea whether or not Susan is receiving Xolair injections, but, I know Susan and I have talked many times about how "good" the odds are (7 of the 9 subjects receive the Xolair injections from the outset of the clinical trial).

During this visit, Susan was to have her standard three "mystery med" injections (2 in one arm, 1 in the other) AND to have blood drawn.  Susan really, really does not like having her blood drawn, so, she always chooses to have that done last.  

So, we started with the injections.  As always, I asked Susan if I could take pictures -- she wants people to know and understand what this experience is like, so, she agreed.  And then, for a minute, she wasn't sure.  And then, at the last minute, with a huge posed smile, she said yes.  The nurses were lined up, but, hadn't started yet.

I'm including two pictures from the injections.  As her mom, I see the tentative look hidden behind her smile in the second...and the third...well, there are no words.

Look closely -- there are two nurses there, trying to simultaneously administer the first and second injections.  They are always ever so kind and caring and I can tell that they do not want to cause pain.  That said, this is the look, even with the cold numbing spray in the white canister.

Done.  This was the arm that received two injections this week.  Check out these way-cooler-than-Snoopy Band-Aids...purple and lime polka dots!  (I have been teasing the staff about the Snoopy Band-Aids for weeks now...seems like there should be more variety and all...and...today, there was!)

After injections came the much dreaded blood draw.  For those of you who were there for Susan's remarks at the FARE luncheon (or those of you who have watched the video of it -- in the blog entitled In Susan's Voice), you will know I have strongly encouraged Susan not to look when they draw her blood.  I believe it hurts, but, I also believe she doesn't like seeing her blood drawn (I call this my vampire theory).  You will also know, that Susan very candidly stated that she doesn't believe that not looking will make a difference.  Perhaps she is right.

During this visit, they drew an extra tube (the one on the left).  I was curious about it, so, I asked -- it is to check Susan's IgE levels.  For those of you who don't know, the IgE level is basically a predictor of how likely someone is (or is not) to react to exposure to an allergen.  That extra tube made me wonder -- I think the researchers are interesting in knowing whether or not Susan's IgE levels, which were very, very high before the clinical trial began, have changed at all during the injection phase of the clinical trial.  Hmm.  Now I am curious, too.

As with the rest of the labs drawn during the course of the clinical trial, we will not get results -- at least not during the clinical trial.  I did not think to ask (I asked A LOT of questions, but, I do occasionally come up with one I didn't even think to ask before we got started -- sometimes I feel badly about not having thought to ask, but, other times, I remind myself that it was impossible to know what being in the clinical trial would be like until we were really in it...)  All of that aside, I WILL be curious to see if we receive any of this data once the clinical trial is over.

During this visit, when Susan heard they would be drawing an extra tube of blood, she made an unhappy face.  (This, by the way, confirms my vampire theory).  One of the nurses very kindly asked Susan if there was anything they could do to make it better.  

And I was SO, SO proud of Susan -- my quiet, accepting child -- when she said "I like it better when you use that pop top thing."  Over the course of our visits, different nurses have done things in different ways -- Susan always observes and never complains...but, she HAS been forming some opinions about things...and I was thrilled when she shared that with the nurse, who was ALL TOO HAPPY to get the "pop top thing," which is essentially a fine-tipped needle with a numbing agent in it that makes the sound of a soda pop being opened as it punctures the skin and is then worked into the vein.

Not watching:

  
Watching:

So brave.
So incredibly brave.
And as I sit with Susan through it all, I find myself wondering -- is it bravery, or is it really grit and determination -- and hope for a better future?  Maybe some of both.  Probably.

Between the blood draw that took place after the injections and a great visit with Dr. Jackie Pongracic where we talked about everything -- ranging from a revisiting of the FARE luncheon to Susan's brother's mouth injury in the fall -- our thirty minute observation period passed quickly.

But, not so quickly that we didn't admire the grass growing on the top of a roof we could see out our 19th floor window.  Sometimes it is the little things.  Apparently there is grass on a portion of the roof at Lurie Children's Hospital, too.  We could see it when we looked sideways out the window, but, it was hard to capture in a photograph.  This, however, was pretty cool:

And then, because it was an early release day from school, and so quite certainly not worth trying to get back to school (we didn't leave Lurie Children's Hospital until after noon and Susan's school dismissed before 1:00 pm), without guilt, I took Susan for a skate fitting (her feet seem to have had a growth spurt!)...

And then we snuck in a lunch at...guess where?  Zapatista!  Aside from the fact that I really feel that they handle food allergies well there (they are peanut free except for the mole sauce, which is prepared and stored in a separate section of the kitchen AND the fact that they always use a clean pan for her meal)...I also love that they have a guacamole of the day.  Susan and I like to talk about what it might be on the way there...and during this visit...in keeping with the green theme (green rooftops and all), the guacamole of the day had kiwi in it.  It was incredible.

As we gorged ourselves on what might be the yummiest guacamole I have ever had, we talked about everything -- and nothing -- and her new little friend, Amelia, whom she met in conjunction with the ice show.  Like Susan, Amelia loves to ice skate, and she lives with food allergies...and she is a darling little 5 year old who was a Tot in this year's ice show.  Susan was a Tot in her first ice show years ago...

And last Thursday, Amelia needed a bit of extra support, so we made a plan for Susan and Amelia to skate together.  As soon as we finished eating -- guacamole and quesadillas -- two foods filled with a number of Amelia's allergens, Susan went to wash her hands and face, saying "Mom -- Amelia couldn't have eaten ANY of this!"  I was so proud of her for GETTING IT.  But, then again, if she doesn't get it, who will???

On the way to the rink, Susan confided, "Mom, it's kinda nice to have someone look up to me.  I like that Amelia likes me."  Well, Susan -- I like you, too.  And...lots of people think you are inspiring and brave...but I get it...and I am so glad you have Amelia in your life now.

We did not talk at all about what next week holds on Thursday.  And yet, I'm pretty sure it was there, in the back of Susan's mind as much as it was in my mind.  How could it not be.  

And then, at bed time, after Susan's siblings were safely tucked into bed, and I was snuggling with her, I took off my social worker hat and did something any reasonably wise person would NOT do...I asked Susan -- because I was pretty sure she would not place the label herself...

"Are you scared about next week?"

Looking steadily at me, she replied, "It would be hard not to be." 

Oh.

So, she's trying not to be.

So -- she IS...

As I was formulating a reply, Susan continued, in a clear voice filled with quiet conviction...

"But it could all be so worth it, Mom."