Photo by Rebecca Gould Photography

Wednesday, September 10, 2014


I have only ever seen a very few hives on Susan.

For better or for worse, Susan has never really gotten hives.  Even when she had her worst anaphylactic reactions, she never had hives. 

I can count on less than one hand the times Susan has had hives prior to being enrolled in the clinical trial.

Three times, exactly -- once, a single hive on her face after eating out at a local restaurant, a second time at school, a smattering of them across her upper chest...and the medically induced hive from a scratch test during the clinical trial screening process.  That's it.

During the food challenge that resulted in her being enrolled in the clinical trial, Susan developed hives...and then, once, shortly after being enrolled in the clinical trial, while selling Girl Scout cookies (not a single box was open), she developed a giant "mystery" hive on her cheek.

Susan developed hives during the rapid desensitization and from that point forward, walked around with a hivey rash on her back, chest and cheeks that seemed to improve and worsen with only a vague connection to Susan's daily dose...

The "hivey state" continued through the middle of July, at which point it mostly subsided, to the point that it was pretty much resolved.  Surprisingly, I cannot remember when I stopped checking (read:  scrutinizing) Susan's skin daily, but I know that it was sometime in July.

Fast forward to now.

For those of you who have followed our journey, I have every reason to believe that Susan originally received injections of the placebo during the build-up phase of the PRROTECT Clinical Trial that she is in.  I have every reason to believe that since she is now receiving open-label injections of Xolair, the medication that is believed to inhibit the body's autoimmune response thereby allowing for rapid desensitization to peanut through oral immunotherapy, Susan will do well.


Something happened in late August that gave me pause.
We were celebrating Susan's birthday at Key Lime Cove...she was in a bathing suit...and I realized that she had hives...and not just a few...

Since then, I have watched her skin carefully.
Sometimes she has hives.

Other times, not so much.

Her cheeks were flush and her hivey rash was far more present than not during our most recent visit to the Clinical Research Unit (CRU).  The doctor observed this...and because there are three doctors, and we do not always see the same one, we talked about the condition of Susan's skin rather at length.  I could tell that the doctor was surprised. 

(I felt that her veiled -- for I am sure Susan did not pick up on it -- surprise confirmed a niggling bad feeling I have been having.) 

There is a part of me that wants to call the clinical trial coordinators or one of the doctors we have come to know and trust.  I want to share my fears with them.  I want them to reassure me that all will go well when Susan begins the rapid desensitization to peanut in the middle of September.

The hives haunt me.
For, if Susan's autoimmune reaction to peanuts is supposed to have been inhibited by the Xolair, why does she have hives?

Why, after all these weeks of injections of what we know is Xolair, is Susan's skin looking like this?

The image of Susan's hives is with me at all times.
I think about her skin, peppered with angry little red marks at red lights, while reading, in the grocery store...I cannot shake it.

I find myself thinking that surely, surely they mean nothing.  I find myself absently and ferociously (yes, at the same time) thinking that she just has to have a good outcome -- that after all she has been through, surely, SURELY she deserves for this to go well.

And then I am immediately ashamed, and sorrowful, for I am painfully aware that far more children than I can possibly imagine face terribly frightening, painful and uncertain medical procedures and treatments every day...and that for them, the outcomes are no more guaranteed than Susan's.  I am particularly aware of those children living with cancer and cystic fibrosis and premature birth because of personal connections...but I am sure that there are hundreds of other ravages children face every day that I can hardly fathom.

And then I pause...for this is not just about Susan. 
It never has been.
This is for the hundreds and thousands of children (and adults) living with food allergies...whose lives are defined, limited or controlled by their food allergies. 

As much as I desperately want this clinical trial to work for Susan, I also want it to work because of its potential impact, its promise...

For as devastating as it is to imagine that Susan might not have a favorable outcome as a result of the clinical trial, it is even more difficult for me to imagine what it will mean for countless others if she does not...

1 comment:

  1. As a mother of a child living with food allergies, I share your fear of those hives and what they could mean. I also share with the you the weight of your child's treatment and the impact it has on others - which is why we share our OIT journey, as well. We will be following Susan's progress and hope and pray for the very best outcome!