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." 

Alone

I think my heart is breaking.  

Actually, it might be broken.

One of the things I fear most -- aside from an allergic reaction -- happened today.

Susan was subdued when she came home.  She'd gone directly from her junior high school to Chess Club at her elementary school, so, I did not see her right after school...but, I knew the minute she walked in the door that something was...not right.

I actually had all the pieces I needed to put it together before she even walked in the door...but...I hadn't. 

Sadly.  But, even if I had, I'm not entirely sure what I would have done about it...if anything.  For really, I am quite powerless in this particular situation.

It wasn't hard to get Susan talking...

"Susan's" peanut and tree-nut free lunch table has dwindled to three friends.  Today, all three of those friends were on a special field trip.  They had (as good friends might do) forewarned Susan about this...and unbeknownst to me, Susan had been thinking about it.  A lot.  She won't admit that she was worrying about it, but, from the look on her face, I'm pretty sure she had been.

Today, when Susan walked into lunch, she did so with the heavy knowledge that she was quite likely to be alone at "her" table.  She had asked a couple of the girls who used to sit at her table if they would join her there today, but, they didn't.  And, while a part of me wants to be angry with them, how can I be?  It isn't THEIR responsibility to ensure that Susan does not sit alone.  It really isn't.  I believe this.

As Susan, my husband and I sat in the living room, Susan explained -- with a stoic look barely hiding the tears -- that she sat alone from the beginning of lunch until "her" table was called up to get milk...and for about "two minutes" after that.  

Two minutes.

Do you have any idea how long that is?

I do.  

I just sat through two minutes.  It was interminably long.

Take two minutes.  Try it.

Imagine being eleven and sitting -- stranded, alone -- at "your" lunchroom table.  Susan cried as she talked about it, and I hardly knew what to say.  

Eventually, some of the girls who sit at one of the other peanut and tree nut free tables (an "overflow" table for one of the "popular" students), invited Susan to join them.  She knows some of them from Girl Scouts, and others from class...and skates with one of them.  Susan knows some better than others.  In the end, it doesn't matter who they were (and yet, it does, for these girls were so compassionate...their caring cannot be overlooked) -- I am so tremendously thankful to that group of girls who saw a truly terrible situation and did something about it.  

  

But even so, I am angry in a way that I cannot find words to express, at the situation Susan was (is) in.  It DOES NOT have to be this way.  And, I fervently wish it were not.  And, despite my best efforts, I am powerless to change it.

I know there are people -- parents, school administrators...even some parents of children with food allergies -- who believe this type of arrangement works.  But, I do not.  And...I hold today's situation up as proof.

As I sat on our sofa with Susan, hugging and comforting her, I looked at her...and as our eyes met, we said "Next Year."  

I so hope she (we) are right.  And while I feel tremendously grateful for Susan's opportunity in the clinical trial, I cannot help but wonder about those who face her same situation without the hope we now cling to...

What's NEXT? (Recent e-mail to Susan's Teachers)

Since I realized that sharing our full experience is what makes my blog most valuable to many followers, I thought I would share an e-mail I sent to Susan's teachers and the administrators at her school last night.  I took the liberty of   

Good Evening.

We are nearing the end of the injection phase of the clinical trial.  Since the trial began, Susan has been receiving regular injections of either the drug being studied (Xolair) or a placebo.

Susan's last injection appointment is tomorrow (Thursday, May 15, 2014), and, as the day is short due to the early release schedule, she will not be at school.  Please feel free to e-mail class assignments or homework to me or to Susan.

Next week, Susan has her first desensitization visit, on Wednesday, May 21st.  The hope is that she will be able to eat the equivalent of one full peanut (250 mg of peanut protein).  This is 10 times what Susan consumed at the outset of the trial, and it is possible that she will not be able to consume that much peanut protein without having a reaction.  (For those of you who are following along in detail, Susan actually only had half of a 25 mg dose before reacting during the intake food challenge, and, as some of you may recall, she had a significant delayed reaction that resulted in her self-administering her Epi-Pen late that night). The goal of the visit on Wednesday, May 21st is to determine how much peanut protein Susan can eat without having a reaction.    

Depending on how things go on Wednesday, May 21st, Susan will either come home for the evening or be admitted to Lurie Children's Hospital.  On Thursday, May 22nd, Susan will consume a single dose of peanut protein -- whatever is determined to be the highest dose she can tolerate on Wednesday.  She will do this in the clinic setting and stay for observation in order to be sure she is able to tolerate it.

Obviously, Susan will not be at school on either May 21st or May 22nd.  As I anticipate that this could be a stressful period of time, if there are any significant assignments due on Friday, May 23rd, I would appreciate it if you could assign those to Susan as soon as possible, so she can be sure to get them done on time.

Beginning on Friday, May 23rd, Susan will consume a small amount of peanut protein in our home each day.  While we are excited about this, we are all, as you might imagine, a bit uncertain about what this will be like.  We know from those who have gone before us that airborne and contact exposures will still pose a significant risk for Susan during this time frame, as her immune system will being being significantly taxed.  We also know that breakthrough reactions are relatively common and have been cautioned to expect the unexpected.  Susan remains clear in her determination that this clinical trial is tremendously important and we feel that her certainty will carry her far during this period of time.  That said, we wanted to be sure Susan's teachers knew what was happening, in case she needs extra support.

The sixth grade team has been incredible this year, and I cannot thank you enough for all that you have each personally done to support Susan.

If you have questions or concerns, please feel free to e-mail me or to call me.

Thank you.

(Uneventful) Injection Visit -- Week 10

Susan is in the injection phase of the PRROTECT clinical trial.  She has been receiving three "mystery med" (either Xolair or placebo) injections -- one in one arm; two in the other arm -- approximately once every two weeks since she was enrolled in the clinical trial in February of this year.  I have taken photographs during each of her visits to the CRU (Clinical Research Unit)...and, I have written what could pass for rough blog entries about each of those visits, but I haven't posted anything to my blog because until last week, it didn't seem like I had much of anything to report...

Then, last Friday, while at the FARE luncheon, I was talking to the parent of a child with multiple severe food allergies.  She told me she has been following my blog since that first post -- the morning of Susan's first (and second) food challenge -- and that she checks daily for updates.  I filled her in a bit about the injection phase, and, as I was doing so, I realized that I have ever so much to report, even if it doesn't seem like much.  SO, from now on, I'll post about every visit -- and I'll go back and proof read those other near-posts and get them posted soon, too.  So sorry, folks, for not "getting it."  I do now.

On Tuesday, May 6th, 2014 Susan had a clinical trial appointment.  It was Week 10, or Visit 9.  (This is confusing?  Yes, it is.  I've tackled this in the blog entry entitled Nuts & Bolts...but, don't worry if you don't follow -- I barely do!).  As Susan has not had any adverse reactions to the injections, this appointment was scheduled to be a short one -- one hour in all.  (I write this with tremendous thanks and gratitude to the universe, because, let me just say that I eye that big red and black emergency bag with a mixture of appreciation and apprehension every time we are in there -- and while I am so glad to see it there, I also cannot help but wonder -- what all does it contain and under what circumstances might we need it!?  Thus far -- and thankfully -- we have no reason to know.)  

As usual, we started our last visit with a check of the basics -- height, weight, vitals, and some chit-chat that seems idle and innocuous but in which there are always carefully worded questions about how Susan has been...and I know they are really, really listening to our answers -- both about the physical as well as about the "rest" of Susan.

I have come to really appreciate how the trial coordinator and nurses have gotten to know about and care for Susan.  They have kept good track of her skating this season and know about upcoming competitions and other important things -- like Jason Brown's Olympic skate and the Park District of Highland Park's annual ice show (in which Susan had two hard-earned solos).  They are beginning to understand just how stoic and understated Susan is, and I can see them watching and assessing her carefully during injections.  I think we all know Susan isn't going to tell them the injections hurt, even though she recently admitted to a room of nearly 400 people that they do!  That's just how she is. 

And here's the ouch she tries so hard to hide:

During this visit, the nurses were being playful, working hard to get Susan to tell them which arm she wanted the third injection in (remember -- one in each arm, a second dose in one arm).  Susan wouldn't pick, although she did eventually acknowledge that the second injection usually hurts more.  The nurses lightheartedly pressed Susan to pick an arm, or a nurse, or SOMETHING so that she would have control over where and how the third injection went in. 

When Susan wouldn't pick, I casually suggested we flip a coin.  And -- no surprise here -- the nurses went right along with that suggestion.  In short order, the third injection was over and then it was just a matter of waiting for the thirty-minute observation period to pass.  While waiting, Susan worked on her remarks for the FARE Luncheon (she did an incredible job, and you can watch a video of her remarks in the blog entry entitled In Susan's Voice FARE Chicago Luncheon 2014)...and when we were free to go, she wasn't actually finished, so, we hung out in the CRU a bit longer than required (that was a first!).

Actually, I was not in any real hurry to leave...

It is hard to put this into words, but, there is something about missing school, driving into the city, and knowing Susan is missing things she enjoys all in order to receive injections that may OR MAY NOT contain a medication (Xolair) that might (or might not) help her tolerate greater exposure to peanut protein that is...surreal.  Over the last few weeks, I have felt increasingly like it is important to pay some sort of greater respect to these visits -- to recognize the potential import of them...   

Having said that, I'm pretty sure that if I dug through my e-mails and found the original e-mail I sent to Susan's teachers, the school nurse and various other administrators, I would see that I pledged Susan's attendance would be as unaffected as possible by her participation in the clinical trial.  (I did just that, and my memory serves me well.  Curious about what I said at the beginning of all this?  Check out my blog entitled Telling Teachers, Administrators, and other School Personnel...).  I meant everything I wrote in that e-mail -- at at the time.  That said, I am now ready to admit that I have taken some "poetic license" on recent clinical trial days.  As is often the case when people push the limit, it started small.  About five or six weeks ago, knowing Susan would miss a lesson with her jump instructor because of the timing and length of a clinical trial appointment, I picked her up at the beginning of her lunch period and we stopped at a skating rink on the way to Lurie Children's Hospital so she could have her jump lesson early that day.  (While there are great sacrifices involved in the clinical trial, where and when possible, I try to minimize them).  A few weeks later, just after the incident that prompted me to write the blog entitled Sixth Grade Lunch, I offered Susan lunch at Zapatista instead of returning to school (just in time for lunch).  She jumped at the opportunity to do something fun and special...and I was pleased to eliminate the lunchroom table issue -- even if only for a day.  By the time we had eaten lunch together, it didn't seem worth taking her to school, even for her much-adored English class. 

As time has gone on, I have begun to feel that there is tremendous importance in honoring Susan's bravery and sacrifice -- in big ways and in small.  While we could have (and did) made some of these injection appointments quick trips in and out of the city (as quick as one can when it takes an hour or more one way), these trips are part of something potentially momentous, and I have come to feel that it really is important to honor Susan...and to just take time...

And so, on May 6th, before we went into the city (before school started, actually), Susan had an hour-long choreography lesson with Kimmie DiNicola.  They were working on her ice-show solo...and it was a great way to start the day.  After we finished at the clinic, we stopped off at what is becoming our favorite post-clinical trial lunch spot -- Zapatista...and we talked -- about everything...and nothing...and I was thankful for the time with her, in a restaurant where we feel safe, over freshly prepared guacamole...

In Susan's Voice -- FARE Chicago Luncheon 2014

Susan was asked to introduce Dr. Jacqueline Pongracic at this year's FARE (Food Allergy Research & Education) Spring Luncheon on Friday, May 9.  My reserved child dug deep into herself and spoke with quiet conviction, moving me and many of the nearly 400 others in the room, to tears.

A number of people have asked me to post the video of Susan's remarks.  But first, special thanks to two of Susan's teachers -- Mr. Janzen and Mrs. Gutierrez, who took time out of their day on Thursday to help her prepare, to my dear friend Kristin Lerner who worked with Susan Thursday night and to my husband's childhood friend, Alan Dalinka, for recording Susan's remarks and for helping us get them into a shareable format.

I am thankful for the opportunity Susan had to speak, as she was warmly received and felt tremendous support.  Do you want to be a part of the cure?  Here's how.