Photo by Rebecca Gould Photography

Tuesday, January 27, 2015

4000 mg is Just a Number

I was not prepared for this.


Sure, I was worried that Susan would have trouble tolerating the 4000 mg of peanut protein challenge today...
  but I know that worry does funny things to my mind...
  it makes me think about things that I know are truly unlikely to happen...
  my worry could be crazy-making...

I try not to fall into that kind of worry...
  (I acknowledge it, but I do not let it live within me.)

I try to remind myself of "what the reality is likely to be."
I practice a positive script.

Yesterday, as I carried a pit of fear around with me, I pictured us stopping off at the Ivivva store for something fun (knowing Susan would have a clinical trial gift card to spend), and thought about where we might have dinner...

Susan's sister wanted us to walk over to the Hershey's store to buy a pair of Reese's Peanut Butter Cup headphones...

All positive, based-on-success, fun, celebratory things.

Should Susan feel like doing any of them, I'd be happy to, but right now she is sleeping off the effects of the IV-push Benadryl...while the machines do their job, monitoring her blood pressure and pulse oxygenation.

I am ever-so-cold -- shaky...the way I get after something super stressful happens.

My mind is filled with questions.  What does this mean?  What does the future hold?  In the minutes after Susan self-administered her EpiPen, I asked the clinical trial coordinator, knowing Susan had wanted such answers yesterday, hating that I hadn't had them for her then.  

The clinical trial coordinator reminded us that Susan's tolerating 2000 mg of peanut is incredible -- and I know she is right.  But, I also know that it is far from the goal -- far from the goal of the clinical trial, and far, far from Susan's Snickers Bar.  (While it has NEVER been about the Snickers Bar, we are at a point where Susan is really ready for her daily doses to be something other than peanut flour.)  

The clinical trial coordinator explained that while there have been a few subjects at other study sites who have not tolerated the 4000 mg dose, this is new territory for them here at Ann & Robert H. Lurie Children's Hospital.  And then she said Susan could try again in a month or so.

I think my mouth fell open.  Really?  I managed to ask (somewhat incoherently) about an updose between the 2000 mg dose of peanut protein Susan is currently taking daily and the 4000 mg of peanut protein she could not tolerate today.  I think the answer was no, that that isn't done...but I didn't really understand why.  I think it probably has something to do with protocol.

Right now, I have more questions than answers.

Susan woke just long enough to tell me that she is "super sad" and that she wants to try to tolerate 4000 mg of peanut again.

Oh my.

She is looking to the future.

And I am stuck in the now.
I hate that she still has all that peanut in her.
As much as I hate vomit, I wish she would...just...vomit.

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