Photo by Rebecca Gould Photography

Monday, September 15, 2014


Pretty much everyone I know has a date (or two, or three) indelibly etched in their minds...for me, it is the date of my mother's death (I was 11) and the date of my father's death [I was a "young " (read: green) parent of three children under the age of three...].  Of course, I also carry with me the date I married my husband (20! years ago)...and my own birthdate...and my husband's date of birth and the birth dates of my children...but all of those things are in the past.

When Susan was moved to the Open Label Injection arm of the clinical trial, we scheduled a number of "injection-only" visits.  I liked the certainty and predictability of those appointments -- two weeks apart...

I'm pretty sure that it was at my suggestion (at some point over the summer) that we scheduled Susan's back-to-back Week 12 appointments for rapid desensitization to peanut...and I'm also pretty sure that almost as soon as the appointments were scheduled, I sort of wished they...weren't.

This isn't to say that I didn't want Susan to make a second attempt at rapid desensitization to peanut (for I did), but that maybe (in hindsight) I wished I did not have an exact date in mind... 

September 15th (all day -- with the goal that Susan consume 10 ever-increasing doses of peanut, until she reaches the maximum dose of 250 mg, the equivalent of 1 peanut)
September 16th (hopefully less than all day)

Ever since we set the date (and I received confirmation e-mails), Week 12 has loomed.  September 15, 2014 is a date that has been indelibly etched in my mind -- even though it was months, then weeks, the days in the distance.  

I found myself wondering how a future date...something that I had yet to experience...could take up so much space in my mind?

Is it foreboding?

It is 4:30 am on September 15th now.  I slept fitfully last night -- awake more than not, I feel certain.  I was awake for good at 3:00 am, although I forced myself to stay in bed...even though I knew I would not fall back asleep.  

While there is a part of me that believes Susan's rapid desensitization to peanut will go much, much better than it did the first time around, there is another part of me that fears that it will not...

I have jokingly told several friends that I think I have PTSD from the Susan's rapid desensitization to peanut in late May of 2014.  While I do not truly believe (even if I DO put my social worker hat on) that this is the case, the thought does cross my mind...with some regularity.

As the day has drawn ever-nearer, I have tried to prepare myself for what is likely to come.  I get hung up on snatches of what I remember from Susan's first rapid desensitization to peanut...especially what I remember about what happened after Susan ate the 60 mg dose of peanut...and after the doctors administered the Benadryl through Susan's IV.

Susan slept, and I thought (for just a few minutes) that we were done..until the doctor kindly and gently explained that they needed to encourage Susan to continue with the food challenge if she felt well enough.  I have spent a lot of time reliving that point in the clinical trial.  They weren't asking me...and I understood that then, and know it now...and yet, I agreed that we could move forward, knowing we were in uncertain, (dangerous) territory.  

I know that, should we get to the same point today, I will agree again, for this is a clinical trial -- this is not all about Susan -- and the researchers need the information that will be gleaned if we move forward.  

And I that Susan has assented, will she, too, weigh in?

In my best moments, I believe in what we are doing.
And Susan's certainty (even in the last few days) holds me steady.

That's good, because I think that, even if the Xolair has been effective for Susan, there is a very good chance she will not reach the 250 mg dose without issue.  (I have heard that even the kids who have done very well during their Week 12 rapid desensitization to peanut have not reached the 250 mg benchmark.)  

But...I also think it will be harder (much, much harder) this time.  In some ways, I like that I know what to expect, but in other ways, knowing what is coming is much, much harder than it was not knowing.

1 comment:

  1. Good luck today. Thoughts are with you all day today.