Photo by Rebecca Gould Photography

Saturday, May 24, 2014

The Back Story

For those who are new to Susan's journey, here is the backstory:

Susan is in a clinical trial at Lurie Children's Hospital in Chicago.
The clinical trial is called PRROTECT.
There are nine (9) subjects in the double-blind trial.
Two (2) of the subjects are controls.
Seven (7) of the subjects will receive injections of the medication Xolair, which is believed to decrease the body's autoimmune response thereby increasing success rates in oral immunotherapy.
All subjects in the study will (eventually) receive the Xolair, as any subject who does not make progress toward increasing tolerance of peanut by Week 19 will begin receiving open-label injections of Xolair.

For those who do not know Susan, I am certain that it sounds like we are taking many big risks.
And, we are.
But, Susan's allergy is so extreme and has affected her life in so many ways that we feel the opportunity to receive the Xolair in conjunction with oral immunotherapy is well worth the risk.
While some who participate in OIT have to worry about worsening of the allergy, we feel Susan's allergy is already so bad that this risk is worth taking.

For us, the clinical trial has never been about Susan being able to eat handfuls of peanut and whatever other peanut she wishes all day long.
The clinical trial is about decreasing the daily risks she faces (she has had multiple well-documented airborne and contact anaphylactic reactions over the years) in an effort to increase her overall quality of life.

Some day, she wants to:
Fly -- to places she will be able to get a stamp in her passport, like Greece, Egypt and Spain.
Try Samples -- at Whole Foods, Mariano's and Caputo's.
Watch a Movie -- in a movie theater.

Since we started the clinical trial, we have become increasingly aware of the potential impact of this work (and other clinical trials like it), and we have begun to appreciate how Susan's role in this particular clinical trial is part of something much bigger than what it might mean for Susan alone.  Even though it appears at this point that Susan is either in the control group or the Xolair is not effective for her, Susan intends to see the clinical trial through.

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