Photo by Rebecca Gould Photography

Tuesday, May 20, 2014

Tomorrow: To eat (a) PEANUT?


As a parent I do a lot of things.  I read to my children, I pack lunches, we host play dates and I schedule activities...oh, and I drive (rather a lot).  I try to be their best advocate while ensuring that I see my children as individuals with their own separate strengths and weaknesses.  I try to teach as I go, and to connect with each of them at various points in the day...recognizing that they each have their own unique personalities, needs and "best" times of the day.

I am up with Susan at 4:50 almost every morning.  We cuddle.  I make her breakfast...and I sit with her while she eats.  It is "our" time.  I make a point of being present for Meg from the minute Susan and Paul walk out the door to go to the rink until the minute Meg gets on the bus or I drop her off at school (Carl squeezes in there, too -- although as a late-to-bed, late-to-rise kind of kid, he is usually on a tear!).  I make a point of listening to Meg practice her violin most days...and I carve out time (even when I am so tired and DONE with being a parent that it is the LAST thing I want to do) at the end of the day for Carl, who is at his ABSOLUTE best then.  

There was a time when I thought a lot about my parenting goals, philosophy and the like.  I think I even read some books on the subject.  At this point, I do not think about those things that often -- while there are CERTAINLY areas in which my parenting could improve (I probably speak for all parents out there), most of what I do is ingrained at this point in time.  (Yes, even the occasional loss of patience...)

I have been busy today...but, in the back of my mind, tomorrow has loomed -- ever-present.  I find myself wondering about my role as a parent in the plan for tomorrow.  I find myself thinking of the parents we know who faced heart-wrenching decisions about their son's medical care -- eventually signing consents to allow the treatment they believed would give him the best possible chance...and I wonder -- are we (am I) right in the decisions we have made leading up to this day?  Is it ever clear?

We sought out a clinical trial for Susan.  We felt (feel) fortunate to have been offered a spot...and we were thankful when Susan was enrolled in the PRROTECT clinical trial at Lurie Children's Hospital.  This is exactly what we wanted...right?

I think...

Tomorrow is the day that Susan will be presented with 250 milligrams of peanut protein (broken into a number of smaller doses over the course of the day)...with the hope that after a series of injections (with either Xolair or a placebo), she will be able to tolerate consumption of that much peanut protein.   

[That is (approximately) one whole peanut, by the way...and about 20 times what Susan consumed at the outset of the clinical trial -- the consumption of which resulted in a delayed anaphylactic reaction later that night...]

The sane, rational, clear-headed part of me says:
-- This has been done before (but not with my child)
-- There has been documented success (but not with MY child, at least...not yet)
-- This will be in a clinical setting (BUT they told us to bring our Epi-Pens...)
-- This could be incredible (but WHAT IF it is not?  I read that consent...and who needs to fly?)
-- This is what Susan wants (but WHY?  And isn't it OK enough even as it is?  No, NO.  I know it is not good enough as it is.  And if I need convincing, I only have to listen to her remarks at the FARE Luncheon -- In Susan's Voice)
-- This is for the greater good (and so please, please dear universe, remember that this is MY child...)

As a parent, all I can do is my best.  I do not know what tomorrow holds, and I am...afraid.  (Is my best good enough?)

I am afraid of what tomorrow will bring...
And I am afraid of the tomorrows beyond it.
I am so incredibly afraid of home dosing -- and yet, we will do it -- exactly as instructed.
Because my wish for a better future for my daughter is stronger than my fear.
But, that doesn't mean I am not afraid.  
What if, in our desire to make things better for her, we make things...worse?
And -- irrationally, probably -- I am afraid that someone out there will think "oh, she's not allergic any more..." (which could have devastating consequences...)

For years, we have avoided peanut -- cross-contamination, dust, even airborne exposure -- and now, as Susan's mother, I am going to sit with her -- supporting her, encouraging her, ENDORSING her...consumption of peanut.  Insane.  Incredible...and hopefully, hopefully, so worth all the fear, all the anxiety, all the...risk.


  1. <3
    Praying for you to have an amazing day with the perfect result!

  2. All of these thoughts and emotions are perfectly rational and demonstrate your love for your daughter. As a mom to a PA teenager (and figure skater too) I will be praying for the best possible outcomes for her and for you to find peace with supporting her as she undergoes this exciting (and terrifying) trial.