Last week, while we were at the Clinical Research Unit (CRU) on the day Susan was originally scheduled to updose from 15 mg of peanut protein to 22 mg of peanut protein, we outlined a plan. The plan outlined future visits and updoses that could, conceivably, if all went well, get Susan "back on track" for reaching that crucial tolerance of 250 mg of peanut [one whole peanut! (forget the fractions!)] by Week 19.
We have A LOT of ground to cover. In Week 12, Susan's first home dose was eventually set at 15 mg (after she failed to tolerate 30 mg).
Dosing Schedule. The math isn't hard. There is a LONG way to go between now (Week 12) and Week 19.
As we were talking about the short-term plan, and the possibility of two updoses in one week (22mg on Monday, June 2, 2014 and 30 mg on Thursday, June 5, 2014), Susan blurted out -- "that EVIL 30 mg dose!"
I was right there with her (for those who missed it, Susan vomited that dose -- AFTER the two-hour observation window had passed -- on the sidewalk in front of M. Henry, the restaurant she chose as a special treat)...but, I was troubled -- I SO DO NOT want Susan to view any part of this clinical trial as a battle against peanut.
I know -- the peanut protein frightens me -- and I feel like I am allowing poison, an unhealthy, unpredictable villain into our home every time I prepare a dose, but still -- I so do not want HER to feel that way. I want her to embrace this peanut protein.
I want her to welcome it.
I want her to love it.
I want it to love her back.
While we have waged a war against peanut protein -- even in its most minute, invisible form -- for years...NOW it is time to make-up...to become...friends?
While the comparison is different, I am reminded of a friend I supported through chemotherapy a few years ago. She and I talked about how the chemotherapy -- which made her sick, stripped her of her beautiful hair and devastated her body in countless ways -- was actually her friend. Without it, she stood not a chance. Now, she stands strong and healthy...and cancer free.
If Susan is ever to shake this terrible demon -- she must embrace the cure.
As the 30 mg updose has steadily approached (tomorrow), I have had my social worker hat on and off a number of times. I have been hoping to ever-so-subtly shift Susan's feelings about this upcoming dose. If it does NOT go well, I so do not want to have to wonder if her head got in the way...
Some days, I feel like I am making progress. Other days...not so much.
(Maybe I need to share the chemotherapy story.)
Today, Susan wondered aloud -- out of the blue -- about tomorrow's dose, saying, "Mom, in traditional OIT (oh, how I hate how easily some of these medical terms have begun to roll off her tongue -- BP, pulse ox, IV, blood draw, stats, etc.), don't they do the updoses more slowly?"
How to answer that?
I know the answer -- and yet, I was not sure I wanted to share the answer with her.
For traditional OIT is very, very different than what we are doing -- this is a clinical trial. There are baselines to be measured, goals to attempt to achieve, progress to be made. While the clinical trial is about Susan, it is also about so much more.
In traditional OIT, the doses would have stopped long before Susan needed an Epi-Pen.
This is not to lay blame, or to criticize -- it is simply an explanation of fact. Of the very significant ways in which what Susan is doing is significant beyond her...
Since the beginning, we have been honest with her.
In the clinical trial, as in life, there are no guarantees.
While we have tremendous hope that this opportunity will dramatically change the severity of Susan's peanut allergy, we also always knew she might get the placebo -- that there might be a rocky road for any number of reasons.
And so, I embarked on an explanation -- as honestly as I could.
-- I admitted that the updosing schedule is different in the clinical trial than it would be in traditional OIT...
-- And I explained how the very nature of the clinical trial (the fact that we do not now, and never will, know what Susan's true "baseline" tolerance of peanuts was -- given that both of her peanut challenges were comprised of cumulative increases in peanut protein) makes comparing it to OIT like comparing an apple to a...peanut.
What else can we do?
And then, Susan diplomatically and philosophically stated: "well, it is not such a big jump to go from 22 mg to 30 mg."
But, in the back of my mind...I have that little voice...