I have had a little pit of unease in the bottom of my stomach all day long. Actually, now that I acknowledge it, I realize that it hasn't been so little...and that it has been there for days. Today, however, it is harder to ignore. Hard to ignore, too, is the slightly nauseous feeling I have when I think about tomorrow. And then, when I allow myself to actually think about tomorrow, I feel shaky...and slightly breathless...as though it is hard to get the air I need...and it seems harder to swallow -- and then, then -- I stop myself. These are all symptoms of what I fear most for my daughter, Susan, who has an anaphylactic peanut allergy. And they live in my head...but, they are very real.
After more than eight years of studiously, strictly, compulsively avoiding anything that might even potentially be cross-contaminated with peanuts -- years in which we have had to educate our families, our friends, our neighbors and our school district about the severity of Susan's allergy and the UPTMOST IMPORTANCE of total and complete avoidance -- we have sought out and agreed to allow Susan to participate in a clinical trial in which (at multiple points in time) she will consume microscopic amounts of peanut -- to the point of an anaphylactic reaction.
Tomorrow is the first of those days -- maybe. After years of hoping for inclusion in a study or a clinical trial, and nearly a year after learning Susan was likely a "good fit" for this particular clinical trial, tomorrow puts us one step closer to...a potential cure...to a totally new paradigm for our lives...if we can navigate the scary road between here and there.
The "gold standard" for diagnosis of a food allergy is a reaction. So, before the actual work in the clinical trial can begin, Susan must first undergo a set of food challenges. Tomorrow is the first of two days. On both days, Susan will be presented with chocolate pudding. One day, the chocolate pudding will contain microscopic amounts of peanut protein. The other day, it will not. Because it is a double-blind study, we will not know whether or not the pudding contains peanut -- nor will the nurses or the doctors. So...Susan might eat peanut tomorrow...or, she might not. And that's what makes the pit of my stomach feel the way it does...
As I try not to think too much about tomorrow, the conversation in my head goes something like this: "Lots of kids have food challenges..."
And another voice interrupts with a "yes, but, not those who have an IgE of 360 to peanut..."
Right. While no one seems to know for certain the exact correlation between IgE levels and the potential severity of a reaction, I can state with confidence that an IgE level of 360 (levels are typically simply capped at >100), is extremely, astronomically high. (We only recently learned that Susan's IgE to peanut is 360 -- until beginning this clinical trial, we only knew it was >100.)
While the voices in my head bicker, I realize that I have to think about tomorrow. I have to prepare. We were instructed in what Susan should eat for breakfast, how she should dress (loose, comfortable clothing), and what we should bring (her Epi-Pens, Benadryl, a change of clothing -- books, games, things to do...and I find myself wondering if she will feel well enough to do any of those things). In addition to the two Epi-Pens Susan carries at all times, I have several more tucked away in my purse...and enough Benadryl for a small army.
In thinking about tomorrow, I know that in addition to the change of clothes for Susan, I am also going to bring my toothbrush and a contact case filled with saline solution. Because while the nurse was quick to reassure us that they have never had to send a child to the Emergency Room, she did also acknowledge that sometimes there have been hospitalizations. And then there was that call I took late last week from a billing specialist at Lurie Children's Hospital who wanted to be sure they had all of the correct information for our medical insurance (she assured me that we would not be billing for any part of the study, adding that she needed the information "just in case"). I know that I cannot know for certain where we will be tomorrow night -- and I feel (superstitiously, I am sure) that if I am prepared, I won't need what I have...
With tomorrow weighing heavily on my mind, I asked Susan tonight how she was feeling about tomorrow. She very matter-of-factly said she was not thinking about it that much. "The pudding is either going to have peanut in it or it will not." That's right, my strong, steady, smart Susan.
As a parent, I make decisions all day long about my children -- some big, some little. Some good, some with room to grow. Some are so inconsequential that I never give them a second thought. Others stick with me for a while. This decision, however, rattles around and around in my head -- not because I doubt it, because I do not -- but because even with my certainty, there is still that little voice I cannot quiet that says "What if?"