Photo by Rebecca Gould Photography

Tuesday, September 2, 2014


Today was Susan's Week 10 appointment at Lurie in the Clinical Research Unit (CRU).  She had three injections of Xolair (I know for certain she is receiving 450 mg of Xolair every time we go for an injection visit because we are now in the Open Label Injection arm of the clinical trial).  I remember well the optimism I felt at Susan's first Week 10 visit -- while I was not exactly excited about the rapid desensitization to peanut she would undergo during Week 12, I was looking forward to seeing how much more peanut she would be able to tolerate than she had been able to tolerate during the intake. 

[And yes, of the back of my mind, I knew Susan might be in the control group, and that it might not go so well, but, at her Week 10 appointment, I was feeling pretty optimistic.  The odds were good -- of the 9 children enrolled in the clinical trial at Lurie, only TWO were in the control group -- only TWO had been receiving the placebo...that meant it was more likely than not (by a lot!) that Susan had been receiving the Xolair.]

Looking back, I have to confess that while I understood the very real possibility that Susan was in the control group -- to the point that I could explain the possibility to others (so I wasn't in denial...), I did not even remotely fathom what it would feel like -- what it might look like -- to be in the "control group." 

Now, looking back at that time, with the hard-earned wisdom that I think [I (now) fervently HOPE] comes from having been in the control group, it is hard not to pass judgment on myself.  Why did I ever believe it could be so easy?  What kind of fantasy was I living?

And so, today, as I was sitting in the CRU with Susan and the clinical trial coordinator, I found myself remembering the optimism I felt at this same visit back in early May.  It is ever so hard to believe that we are in essentially the same place (but hopefully NOT) that we were then now...although, of course, if Susan WAS in the control group, then she did not have a 10-week build-up phase of Xolair injections behind her...and she was just as vulnerable to peanut then as she was during the intake.

It gets all jumbled up in my brain just thinking about it.

The bottom line:  As much as I wish I could know going into Susan's second Week 12 rapid desensitization to peanut whether or not she had been receiving the placebo, I cannot know...that's not how this clinical trial works.

And so, while I want ever so much -- to the point that I feel tears welling up every time I think about it -- for this Week 12 rapid desensitization to peanut to be different for Susan, I feel the need to remind myself that there are no guarantees.

I am encouraged by the clinical trial coordinator's casual comment that three of the subjects who recently completed their Week 12 rapid desensitization did "very well."  Susan and I talked about that in the car, as we drove to her school.  Always seeing the best of everything, Susan observed, "Mom -- it doesn't sound like any of those three were in the control group."  She didn't have to say any more.  I knew what she was thinking.  If there are 7 subjects who received the Xolair and 2 who did not, every subject who does well increases the likelihood that she received the placebo.  

While I never wanted Susan to receive the placebo, given how things went during her first rapid desensitization to peanut, I now FERVENTLY HOPE that she was receiving the placebo during her build-up phase.

I wish I could say I feel as optimistic now as I did during our Week 10 visit in May of this year. 

I did not know then what I know now.
-- I did not know that even today (nearly 2 months later) I would be able to tell you precisely how many days it has been since Susan had a delayed reaction with vomiting (58).
-- I did not know that we would reach a point where neither Susan nor I were comfortable with her being alone...a form of regression that changed (stretched, grew, and challenged) our relationship on the brink of Susan's adolescence.
-- I did not know that I would lie awake many nights wondering about the wisdom of continuing the clinical trial.
-- I could not even remotely imagine the doubts, questions and uncertainty our participation in the clinical trial would evoke in me...

Today's visit was uneventful (thankfully -- imagine if she had a reaction to the Xolair injections at this point...possible, certainly...and yet -- given what she has gone through, it is a remote possibility that I chose not to entertain).

There is a new clinical trial coordinator in training.  Susan helped show her the ropes during her breathing tests.

Look at that huge breath Susan took!

It has become my job to distract Susan during the Xolair injections, which are uncomfortable and painful even with the cold, numbing spray.  She delights in having me sing during the injections. 

I don't sing.
I never have. 
(Kinda like I don't do vomit...)
I am not the least bit musical...the most I ever do is sing Happy Birthday...and I'm pretty sure that even that is off-tune. 
I'm sure that's exactly why Susan likes me to sing while she is getting her injections.  What could be a better distraction than your mother singing Bringing Home My Baby Bumblebee (or is it Bringing Home A Baby Bumblebee?) off-tune and never quite certain about the words...

And today, for the first time in weeks, Susan released me from my standing singing obligation -- a relief to me AND to the nurses, I am quite certain!  Instead, I told a funny story about my father and a boat he bought.  She just barely remembers her Grandpa Lew, and I relish the opportunities to share my memories of him with my children.

Susan, waiting for the funny part of my story.

I do not believe I ever truly distract her during the injections, but I tell myself anything helps...and I hope that is true.

Her bravery, unwavering certainty and staunch commitment continues to astound me.

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