Photo by Rebecca Gould Photography

Saturday, May 17, 2014

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, 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:

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 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." 


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." 


  1. Go, Susan. Sending good energy your way.

  2. Someone may have mentioned this before, but I read an article sometime in the past year that said that people who cough when they get a shot reports that it hurts less. I just tried to find it on line and this is close to what I remember reading: Good luck!