Photo by Rebecca Gould Photography

Monday, May 12, 2014

(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...

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