Photo by Rebecca Gould Photography

Monday, February 9, 2015

Not All Snickers Bars Are Created Equal

I can count on one hand the number of nights we have left our children in the care of someone other than either myself or my husband.I will always believe that it is harder for some parents to leave their children than it is for others.  This is NOT a judgment or a criticism...more what I think is a statement of fact for some parents...those of us entrusted with the care of children whose lives are more complicated (read:  food allergies along with other physical, medical and/or psychiatric issues) than the average child's life find it harder -- for a myriad of reasons -- to leave our children with others.

SO...when my husband announced in late December of 2014 that he was likely to hit his target sales numbers for the year, thereby earning his company's incentive-based compensation trip (five days and four nights in St. February) -- I was both pleased and...more than slightly panicked.I knew it would take many hands to list all of the reasons I should not, could not...would not...go.  Starting with the clinical trial...   and daily home-based peanut consumption (at that time, not knowing what our future held, I was envisioning a full-size Snickers Bar...)   and ending with the fear of the unknown, the ever-present threat of anaphylaxis as we pushed Susan's body to tolerate ever-more peanut...   with countless question marks and uncertainties wrapped up inside
And yet, I also knew that an "invitation" to Club wasn't really an invitation -- those who earn the incentive compensation trip (awarded only to a very small percentage of employees) are expected to attend.  Sure, I thought we could explain...and I was pretty sure the right people would say they understood...but, there was some pressure to attend, even if it was more imagined than anything.And then, there was the temptation of St. Kitts in February -- at the time I did not know that Chicago would experience many days with wind-chills below zero in January and February, but, as a California-girl, I was certain that St. Kitts would top Chicago in February.And then...there was the lure of a few nights to reconnect with my spouse.  I didn't even have to put my social worker hat on to know that a few days and nights of "just us" could be...pretty incredible...especially after the year we had had.(Foreshadowing)At the time, I had heard the term "incidental finding," but I had NO IDEA (tsk, tsk, shameonme) what it meant, or the road the seemingly innocuous phrase would lead us down...So...I set to work...and I identified a woman to stay with our children, and I checked her references (one of whom just happened to be a family I hold in the highest regard)...and before I knew it, I had a plan.But.Still.I made lists.I checked off my lists.I double-checked my lists.I wrote instructions.I talked with the doctors running the clinical trial.I e-mailed the clinical trial coordinator (repeatedly).I looked at how quickly I might be able to get home in the case of an emergency and reluctantly admitted to myself that there was no good way.IF I was going to go, I had to accept that in the case of an emergency, I was not going to be able to get back quickly.I had to put everything I could in place...(As though I could ward of an emergency through my diligent preparedness.)But of course, the very nature of an emergency is that it is unpredictable, unplanned, unpreventable...My husband and I executed medical Power-of-Attorneys for not one, not two, not three, but FOUR couples...And I exchanged e-mail with Susan's school...And I completed a special form so that someone other than us (any one of THREE specially designated someones) could take Susan to Ann & Robert H. Lurie Children's Hospital....And before I knew it...We were going...Sort of.While I had absolutely everything in place, I never felt truly committed to our trip in my mind.It wasn't so much that I didn't trust what all that I had in place as it was the fact that I just couldn't truly see entrusting Susan's care to someone else.As I write this, I know the woman who cared for Susan (and our two other children, as well) might well read this...and I want to be clear that my misgivings had nothing to do with her and everything to do with the unpredictability of life with food allergies.Before I knew it, I was packed, and absolutely everything was in place...Even as I sat in the cab on the way to the airport, I marveled at the idea that I was leaving -- it seemed...surreal.

Right up until the moment our flight departed, there was a part of me that couldn't actually envision myself leaving.
There are no words to explain the way I felt when, upon landing...I turned my phone on and it went...crazy.There were countless text messages from my dear friend (also a Susan), from my daughter (Susan), from my younger daughter...her sister (Meg), and from the doctor on call for the clinical trial.My friend's text read:"Susan's face turned bright red and eyes watering right when we got to Michael's (our safe, go-to restaurant).  I just gave her 50 mg of Benadryl and am going her.  I will make a plan from there."Right on top of that came this:"Just epi'd talked to on call doctor.  I have a plan and will keep Susan with me."There are no words to explain the way as I processed the many texts while calling my friend, Susan.
My husband and I had not been able to get seats together, but when I looked back through the throng of passengers waiting to disembark, I could tell by the look on his face that he'd gotten at least some of the same text messages I had.I knew I had to get off the plane, but all I really wanted to do was stay right where I if refusing to disembark might somehow get me back home faster.My friend was tremendously reassuring...As was my daughter, Susan, even though I could tell she was tired...and scared...and uncertain.Susan recounted her symptoms -- starting with her sister noticing that her face was really, really red (even though she felt "fine"), the fact that she took Benadryl (even though she felt "fine") and then the fact that she started to have trouble breathing.  She added that she had self-administered her EpiPen (a fact which thrills and stills me at the same time -- incredible that at her age Susan has self-administered her EpiPen not once, not twice, not three times...but FOUR times)...and that she felt "fine."Right."Fine" is so very reassuring.Not.Feeling as scared and uncertain as Susan sounded...and worse...I tried to reassure Susan.  I addressed the immediate question of the plan for the remainder of the day and night -- trying to balance Susan's need for space and quiet and her own "place" against my need to assure her safety.
We revised the plan...   And I promised to ask her most burning question -- Would she be allowed to stay in the clinical trial? as soon as I reached the doctor on-call for the clinical trial.Feeling queasy, I wound my way off the plane and toward Passport Control (Immigration), dropping further and further back in line as I talked with the doctor who was on-call for the clinical trial.  The doctor was tremendously reassuring and highly sympathetic.  She assured me that she felt the likelihood of a biphasic reaction was unlikely, given that Susan's reaction had been to her daily dose, and not a greater exposure.The doctor and I agreed to address the most pressing topic first:  the plan for the afternoon, evening and night before tackling the other issues [dosing the following day, continued enrollment in the clinical trial (and not necessarily in that order)...and who knew what else?]  I definitely had my social-worker hat on as I tackled the first problem first.

The doctor and I revised the plan for the afternoon and evening again, and recognizing that my husband and I were the last passengers to clear immigration, and that the officials were waiting for us, I sent a group text to the couples holding medical Power-of-Attorneys outlining the situation (I couldn't even begin to think what their reactions were...but I knew I needed to update them, and I tried to convey that my text was informative only...) and then I...pocketed my phone.

The signage was clear."No cellular devices in Passport Control processing zone."I know I was antsy...and I knew even at the time that that could result in a delay, but I was just itching to get back on the phone...I had to laugh when I realized we were not actually the LAST passengers to clear immigration -- the passenger who traveled in camouflage shorts had been detained and was behind us, waiting for his wife to bring him a change of clothing from his luggage so that he would be allowed to enter the country.  (Turns out, it is illegal to wear camouflage clothing on many Caribbean islands.  Who knew?)
Before I knew it, we had cleared Passport Control, collected our baggage and cleared Customs and we were en route to our hotel -- on a shuttle with a number of my husband's colleagues.

I wanted to get back on the phone.But, no one else was on the phone...And while I was stressed beyond belief, even I was able to recognize that there wasn't an actual emergency...well, not really.I settled for texting -- my friend Susan, my daughter Susan and my younger daughter, Meg...oh, and our child care provider, too...
I left my husband to get us checked into the hotel while I got back on the phone, talking with the on-call doctor for the clinical trial, tackling the bigger-picture issues -- such as what did this anaphylaxis mean...both in terms of Susan's continued enrollment in the clinical trial and -- should she be allowed to stay in the clinical trial -- in terms of dosing?
And...Did I even dare try to tackle the cause?We started with what I am sure the doctor felt were the "easy" questions on a day filled with uncertainty.Yes -- Susan would be allowed to stay in the clinical trial.We shared a tense laugh over the idea that OF COURSE, Susan's road had to be harder, more difficult, less COURSE, we were out of town ...out of the COUNTRY when this happened...OF COURSE.As for dosing, if our child care provider could take Susan to the Clinical Research Unit (CRU) the following day, they would dose at 1/2 of 1/2 of a Snickers Bar...and make a plan from there, based on Susan's tolerance.As for the biggest question of the day...WHY did this happen?Well...that, of course, is the question that still haunts me.Was Susan stressed?  (Unlikely -- she was pretty intrigued by the idea of being home with someone other than us -- a "vacation," of sorts, for a child who hasn't had many vacations in life...)
Was it hormones?  (WHO KNEW?  At 12 and almost 1/2, that was certainly likely...and research absolutely shows a connection between increased risk for anaphylaxis and prepubescent and pubescent girls...)
Had Susan taken any new medications?  (No.  What about a pain medication, such as Advil or Motrin?  No...but that, too, was foreshadowing...merely a suspicion at the time...)
Was Susan sick?  (Time would tell...and the answer was...eventually, clearly and definitively NO.)
Was the Snickers Bar "loaded"?  (Maybe.  And, in the time that has elapsed, I have come to believe this is the answer.  While a dose of a whole Snickers Bar (52.7 grams) might consistently be 4000 mg of peanut, who is to say that one-half by weight or length -- or both, in the aggregate, as I did -- was necessarily 1/2 when it came to absolute peanut content?)
My first day on St. Kitts is a blur.I remember feeling trapped, wanting to get on the first flight off the island and yet recognizing that I would be unreachable for hours, a totally unacceptable option.

I wished we had never left Susan.And yet, even at the time, I recognized that it was probably good for Susan (and me...and us?) to know that she could handle anaphylaxis without us....Even now, as I read that, my eyes fill with tears, and my chest gets tight.Food allergies are terrible...horrible, unpredictable and always, always scary.While I once believed the clinical trial would make things easier, safer -- in a black and white sort of way, I have come to understand that while things will be easier and safer, even if Susan gets all the way through the clinical trial and "graduates," she will still be allergic to peanut.I have come to believe that not all Snickers Bars are created equal. I am pretty sure the doctors running the PRROTECT study believe this now, too.And while I like the idea that not all Snickers Bars are created equal as the explanation for Susan's anaphylaxis (and that certainly has been my experience), the idea that Susan's daily dose is so close to her maximum tolerance -- that her "tipping point" is so close to her daily dose terrifies me.  For if 1/2 of a Snickers Bar that is slightly heavy on peanuts is not safe, is Susan really any safer than she was?

Would any little tiny bit of peanut push her over the edge to anaphylaxis?I'm honestly not sure this is a question that has an answer -- at least not an easy one...And this is why Susan -- and children like her -- are some of the bravest people I know.  The answers aren't easy, and they are not clear-cut.  And yet Susan -- and countless children like her -- keep eating things that would once have -- and still could -- kill them.



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