Photo by Rebecca Gould Photography

Saturday, February 28, 2015


About an hour after Susan took her first post-operative dose of peanut, a bed-pan incident that resulted in her having to roll back and forth several times while her nurse changed her sheets led to increased pain, which lead to...her asking for her pain medication (Norco, which is an opiate).  

I had a mixture of emotions flood through me...
I did NOT want Susan to be in pain.
I also did NOT want Susan to have trouble tolerating her dose -- we would never be able to tease apart the cause...

But we had all agreed, when we decided to avoid NSAIDs if at all possible, that we did not want Susan to be in pain (that brings a host of problems I ALSO did not want), as much as I wasn't pleased about her request for pain medication, I did not say a word.  As a team (the neurosurgery doctors, the PRROTECT doctors and myself), we had agreed that Susan could take Norco if needed.

I was thankful that I did not have to make a decision.

And then, as the nurse prepared to give Susan her Norco, she asked if Susan had ever had it before.
(I tried not to worry too much about the idea that Susan might be allergic to the Norco.)
And then the nurse explained that Norco can cause stomach upset -- nausea, vomiting, etc.

For a split second, I wanted to try to talk Susan out of the pain medication.
I wanted to suggest she try Tylenol first.
I wanted to suggest she wait a few minutes to see if she felt better when she wasn't rolling.
  (I wished she still had her Foley catheter in...)

And then I realized I did not want to stop her from taking the Norco -- we had a plan, and I had to hope for the best.  

I could hardly stand the image of the opioid meeting the peanut in Susan's stomach.
I tried not to think about it, and I did not say a word.
I offered Susan a bag of crackers to snack on...and then I waited, and I watched.

Hours later, I decided I had to move around a bit, and get something to eat or I would be useless the following day.  There is something time-warpey about being in the hospital for days on end, and I was feeling like I wasn't thinking as clearly as I wanted.  I thought a short walk and some fresh air might really make a difference.  That said, I still wasn't totally confident in the peanut/opioid mix hanging out in Susan's body, and I left her door wide open -- feeling thankful once again that it was directly across from the nurse's station.  

I stopped off to chat with Susan's nurse, to tell her I was going to get something to eat -- quickly.  I explained that I would be back as soon as I could, and told her that I wanted to leave Susan's door open.  Another nurse standing nearby (who was not Susan's nurse but who was clearly aware of the peanut thing), asked what the biggest delay we had ever experienced in a food allergy reaction was.

I watched her physically recoil when I said "24 hours."

As she processed my response, I explained that when Susan had been struggling with her daily peanut dose early in the PRROTECT study (before she began receiving open-label Xolair injections), she vomited as long as nearly 24 hours after her dose.  

Susan's nurse looked through her open door and assured me they would keep a close eye on her.

I loved that I believed them, but, even so, I took a very short quick walk over to Foodlife in Water Tower (essentially across the street) and returned with my dinner.

Later, as Susan's nurse was preparing to leave for the night, she reflected on how brave we all are for participating in the clinical trial.  
I contradicted her, saying that Susan is the brave one.
Much later that night, as I sat watching Susan breath, I realized Susan's nurse was right.
We ARE all brave.
(Many people have said that to me along the way, but, I honestly haven't seen it that way -- sure, Susan IS brave...but me?  My husband?  Our family?  I really didn't see it that way until that night.)

The clinical trial has been hard, and downright scary at times.
But, as I said to two of the doctors running the PRROTECT study who came to visit Susan, we have always wanted a cure, and it has always been clear to us that a cure for food allergies is not going to be as simple as a prescription.
We are invested in a cure, and so even when it is scary or hard, or time consuming, we are going to see the clinical trial through.
It is just that important.
And this is something WE can do in the quest to find a cure.

I didn't sleep much that night -- I wanted to keep an eye on Susan...even though I knew her nurse was, too.  I appreciated Susan's nurse's diligence, but, knowing that Susan had eaten 1000 mg of peanut in a compromised state AND then taken a pain medication with an opioid in it just made me...nervous.

The doctors from the PRROTECT study and I had agreed that we would slowly move Susan's daily dose of peanut forward, as she typically takes her dose around 7:30 am. While we did not need to get it back to that early hour immediately (for it will be a while before she goes back to school), I liked the idea of moving it forward while we were in the hospital.

So...Susan took her second post-surgical dose of peanut at 12:30 pm the following day -- about 22 hours after her first post-surgical dose.  While I would NEVER deny her pain medication, and while I had worked hard to keep her relatively unaware of the discussions I had had with the doctors about NSAIDs and opioid-based pain medications (which had been relatively easy to do, as she was either sleeping or plugged into her iPad watching Netflix), I was beyond pleased that she had not asked for anything for pain since the previous day, as I felt every little thing helped increase the likelihood of her tolerating her peanut dose.

Lying flat, Susan started in on her chocolate covered Nutter Butter.  

It was my job to watch for crumbs, as Susan and I had come to understand that crumbs go hand-in-hand with eating (flat) in bed.  

As Susan's nurse joked, maybe that's why moms always say not to eat in bed!  
And sure enough, a crumb of the Nutter Butter broke off, becoming entangled in Susan's hair.  I fished it out, freed it from a hair and popped it in Susan's mouth.  

Yuck, right?

Susan rolled her eyes at me as I popped it into her mouth, but, she didn't complain.
Neither one of us wanted her to have any less of the dose than she was supposed, crumbs and all, she went for it.

She is one determined girl.

I wish I could say I was less worried that afternoon and evening, but, in all honesty, I wasn't.  I'm not sure when I will feel like we are back on even footing with this eating peanut thing, but, we aren't there yet.

Thursday, February 26, 2015


When Susan's pediatric neurosurgeon told us she would need to stay "flat" for about two weeks post-operatively, I don't think I really "got" it.

Flat means -- FLAT.
No pillow.
No getting up to go to the bathroom.
Flat means...figuring out how to drink while lying down.
Flat means...figuring out how to EAT while laying down.
  (and by the way...FLAT is the wrong angle for watching TV)

I think Ann & Robert H. Lurie Children's Hospital is incredible.
But, when it comes to food allergies, Susan and I know from first-hand experience least with her particular allergy profile (peanuts, tree nuts and SOY), the food service department at the hospital really struggles.

There is soy in EVERYTHING.
And while we know Susan can tolerate soy lecithin and soy as an emulsifier (and in recent years have begun to simply avoid foods that have significant soy protein (read:  edamame, tofu, soy milk, etc.), I also know that I would never want someone else to look at something and determine whether or not Susan could eat it.

Add into the mix the fact that Susan is not to eat any new foods (something we agreed to when entering the PRROTECT study), and we came prepared for limited food options.

We brainstormed beforehand, and developed a (short) list:
Scrambled Eggs
Rice Krispies
Fresh Fruit I have done before every vacation (although I was keenly aware that this was NOT going to be a vacation) we have taken over the past 10 years...I packed a bag of non-perishable foods...some easy on the stomach, some packed with protein and iron (Keenwah Quinoa Puffs)...and others just plain fun (Lofthouse Cookies).  I also packed a cooler full of yogurt and cheeses that Susan likes...and ice, although I'm honestly not sure the ice is necessary this time of year (in Chicago).  

I managed Susan's expectations.
Food would serve its purpose...and while it might not be "fun," we'd do fun and interesting food when we got home.

In all that thinking and planning, I forgot to think about what it would be like for Susan to eat while lying flat on her back.

On Tuesday, the day of her surgery, the food thing didn't matter.
She snacked on crackers and drank Sprite through a straw.
  That's harder done flat than you might think... 
  (I only splashed her with it once!)

The morning after her surgery, knowing that the plan was for Susan to take her peanut dose, I encouraged breakfast.  Susan declined initially.  I waited a bit and offered again.  

Rice Krispies?
She rolled her eyes and said "how's THAT going to work?"
Oh.  Right.

(I have her very favorite Lemon Meringue Greek Yogurt stashed in the refrigerator just steps from our room...)
She looked steadily at me.
     I realized I would have to feed it to her.
     I had visions of myself dripping it down her face as I realized she had a point.

Scrambled Eggs?
It took 8 minutes to order the scrambled eggs, but, when I was done I was confident that food services would be using whole eggs (not Egg Beaters or who knew what else) in a skillet reserved for vegetarian egg preparation (read:  not on the griddle and not contaminated with who knows what else).  I liked what they had to say about the single peanut item I saw on the menu and decided to trust them to prepare the eggs.

At the last minute, I asked for grapes, too.

I LOVED the slip that came up with her order, and while options are limited, I feel confident that they totally "got it" when they prepared her order.

Susan started with the grapes, which she was able to feed herself.

And then it was time for the scrambled eggs.
  (I can only say that I did my best.)
Oh -- and I skipped the little bits of egg that I was certain were going to jump off the fork and land somewhere other than Susan's mouth, somewhere undesirable -- like in Susan's hair.

I believe the act of feeding someone is incredibly intimate, even though looking back I do not recall feeling that way when I was trying to feed my 2-year old twins simultaneously. Maybe the intimacy feels greater when you are feeding someone who has been able to feed herself for years -- when your 12-year old daughter, who is on the cusp of adolescence -- is trusting you to feed her with grace, kindness and compassion...(and maybe a bit of humor, too.)

Despite my "feeding success," for the rest of the morning and into the afternoon, Susan opted for finger foods she could feed herself (I am ever so thankful to my dear friend, also Susan, who reminded me several times of the challenges we would face with food at Ann & Robert H. Lurie Children's Hospital, because I came prepared!).

Medical staff were in and out all morning -- the neurosurgery team (twice), and then again later...

I was continually impressed by the thorough understanding of Susan's medical history that every person who enters her room has -- they all understand that Susan's surgery was the result of an "incidental finding" and have at least a concept of what is happening with the PRROTECT study.  

As the morning wore on, I found myself talking a lot about the clinical trial, explaining the underlying premise and answering MANY questions (remember, we're on a neurosurgery floor, so the allergy piece is new to these folks).  There were even some medical staff who were genuinely amazed to learn that such important work in the treatment and management of food allergies is being done at Ann & Robert H. Lurie Children's Hospital.  

After a while, I started to feel a bit like a PSA for OIT, clinical trials, name it, we were educating people...and they were genuinely interested.  (I suppose everyone lives in his or her own little corner of the world, at least some of the time -- and for the most part, the folks we have been seeing are neurosurgery folks...)

As the morning wore on, we talked A LOT about pain management, and, fortunately, we did not really have to make hard decisions about the use of NSAIDs or opioid-based pain medications, because Susan was really pretty comfortable with the Tylenol she was receiving through her IV.

One of the anesthesiology residents, who was listening VERY carefully volunteered that he had recently read an article talking about a possible drug interaction between Xolair (when used to treat patients with uncontrolled asthma) and NSAID's.

There is SO much yet to learn about food allergies.

Around lunchtime, the doctor from the PRROTECT study came by, just to check on Susan.  She reviewed Susan's chart, asked about her pain (by then, her PCA had been removed because she had only used it three times and she was very comfortable).  We decided to give 1/2 of Susan's peanut dose (1000 mg) around 2:30 in the afternoon, with the doctor present.

We pre-medicated as usual -- Zyrtec, Omeprazole and Famotidine at about 2:15 pm and then, at about 2:30 pm Susan took her peanut dose -- in the form of a single Nutter Butter dipped in semi-sweet chocolate.  [She's NOT a fan of plain Nutter Butters, and really misses her Snickers Bars (which is another story)...and had planned to go back to dosing with half of a Snickers Bar before this newest bump in the road came up.]  I'm guessing she'll be back to the Snickers Bar thing as soon as she is allowed.  

Unless I can talk her into a Reese's Peanut Butter Cup...

Thirty-hours post surgery Susan was still connected to a lot of tubes and machines, and while it might not be the easiest photo to look at, to me, it speaks volumes about Susan's courage, determination and commitment.

Wednesday, February 25, 2015

A Bump in the Road

It all started with two words.

"Incidental finding"

Way back on December 11, 2014, when Susan's pediatric sports medicine doctor (who specializes in spinal injuries) called me to tell me that Susan's MRI showed a stress fracture in her lower lumbar spine (which was likely the result of her training as a competitive figure skater combined with a weak core and the crummy timing of a growth spurt), she said something about an "incidental finding."

Struggling to take it all in...with realization dawning on me that when the doctor herself calls to tell you test results it is never good...I asked all of the questions I could think of.  (The only other time a doctor has called to review one of my children's test results with me was the day Susan's pediatrician called to tell me he had never had a patient test as allergic to peanut as Susan had, and he asked me to go directly to the nearest pharmacy to pick up the EpiPen prescription he wanted to call in.) 

I wasn't ready for that call.  

I let the "incidental finding" roll over me, focusing on the treatment of the stress fracture, which was clearly the doctor's primary concern.  The doctor told me Susan would need to be off the ice for (a minimum of) three months.  
I could barely take it in.  

Then she said Susan would have to wear a brace.  

I hung up from talking to the doctor and berated someone working at the rink where Susan was skating -- on the ice while I was talking to the doctor -- into going and getting her off the ice.  OK, I didn't really berate her, but, I was pretty insistent that she leave her position at the desk to go get Susan off the ice...and I'm pretty sure she's not actually supposed to leave...

As I drove, I tried to figure out how to tell Susan that her life was about to change.

My heart ached for her -- my strong, determined daughter who had stuck it out through a terrible, scary time in the clinical trial over the summer because of her dream of representing the United States internationally some day -- was going to have to be off the ice for three months.  

(When things were the worst in the clinical trial -- just before Susan began receiving open-label Xolair injections -- I urged her to think about whether or not she wanted to stay in the clinical trial.  We never wanted her to feel pressure to continue, especially when it was so hard.  She looked at me steadily and said, "I can't (quit).  I want to be able to travel."  And while Greece and a Spanish-speaking Caribbean island are on her list, I know that what she really means -- her dream, which hangs out there largely unspoken -- is to travel to represent the United States as a figure skater.)

How do you tell a child that you are going to take away their passion in life?
How do you tell a child that you are going to take away the very thing that has been their driving force in life?  

I didn't have to tell Susan.
By the time, I got to the rink, she was waiting for me, with tears in her eyes.
She knew.

Later that week, when we saw the doctor, she mentioned the "incidental finding" again.  I asked a few questions, but, let it go when she said she would refer us to a pediatric neurosurgeon in January.  

It sounds dumb to me now, but, at the time, it really didn't seem like the "incidental finding," whatever it was, was that big of a deal.  I wasn't worried, and I certainly could not have foreseen things unfolding as they have.  

But, just for the record, an incidental finding is NOT a nothing.  
I now know incidental findings are clinically significant, even if they do not necessarily require an intervention.  

Susan started PT.
Susan was fitted for a brace.
She picked a cool color combination, and made the 23-hour-a-day commitment required.

Time crept, because, try as I have, the loss of skating has left a huge void.  Three months is 12 weeks.  That's more than 180 hours of not skating.  It is loss of time with friends, coaches...a community.  

Susan has been counting down the days until March 11, 2015, because, according to her doctor, she was healing well.  Her physical therapist said she was getting stronger.  

When we saw Susan's pediatric sports medicine doctor in late January, she gave us referrals to both a pediatric neurosurgeon and an orthopedist who specializes in curvature of spines (something else that had come to light as the result of all the attention on Susan's back). 

The doctor casually said that the pediatric neurosurgeon might just watch the "sticky fatty tissue" growing on Susan's spine...or that he might just "do a quick surgical intervention" so as to prevent further problems.

While it took three weeks of doctor's appointments, assessments, consultations and information gathering, I can tell you that I knew, sitting there with Susan's pediatric sports medicine doctor back in January that we were headed for surgery.  

I could just tell.

Putting on my social worker hat, and my experience as a "Lifecare Manager," I got Susan appointments with both the pediatric neurosurgeon and the pediatric orthopedist in record time.  We learned that the "sticky fatty tissue" had a name -- a "spinal lipoma," and while the pediatric neurosurgeon was unwilling to make a recommendation during our first appointment with him, I could just tell we were headed for surgery.  I had such a strong sense of it that I actually asked him if he would be able to do it so that her period of convalescence could coincide with her existing ice restriction.  He assured us he could.

(As an aside, let me say that I am not a crazy skating mother.  I don't NEED Susan to skate -- I don't even like hanging out in cold ice rinks, actually -- and I certainly don't NEED Susan to become an exceptional skater.  But, I AM her mother, and I am acutely aware of how the loss of her passion, her friends, her community, has saddened her.  For this reason alone, I want her to be able to begin skating again as soon as she safely can.)

As we were leaving the pediatric neurosurgeon's office after our first appointment, she said flatly and clearly "I'm not having surgery."

I reassured Susan that I understood, and underscored the fact that more tests and evaluations and assessments were necessary first.  And then, because -- even without having learned anything more about a lipoma than what the pediatric neurosurgeon had shared with us -- I felt he was going to recommend a surgical intervention, I reminded her that he said he could get it done while she was still off the ice.

She just looked at me.

That night, I got educated.  I learned that "incidental findings" are never "nothing."  They almost always require a closer look.  I learned that spinal lipomas can lead to a tethered spinal cord, which can cause very severe issues (loss of bowel and bladder function, paralysis, and worse).  It became clear to me that if there was any evidence of tethering, the decisions to be made would not be about whether or not Susan would undergo surgery.


At that, I turned my attention from learning about spinal lipomas to learning about pediatric neurosurgeons.  I reached out to my network of friends and college classmates and learned that Susan's pediatric neurosurgeon is very highly regarded.

I started thinking about peanut dosing in the face of surgery.  

All the factors and variables were crazy-making.  
I turned all the issues I could think of -- dosing day of surgery, stress on the immune system, possible drug interactions, how compromised Susan's immune system would be post operatively -- around and around in my mind...and as the minutes, hours and days passed, I became more certain than ever that if Susan needed a surgical intervention, I wanted it done soon, and I wanted it done at Ann & Robert H. Lurie Children's Hospital, where they know her.

Susan had a number of appointments -- assessments, tests, measurements -- all designed to gather more information to help her pediatric neurosurgeon make the best recommendation.  And then we waited.  And we waited some more.  And I started to think that if a surgical intervention was needed, there would be no way to get it done soon enough that Susan's recovery would coincide with her ice restriction.

Susan and I talked a lot.
She came to understand the risks in not addressing a potentially tethered spinal cord.  
And while she did not like the idea of surgery, she started to accept that it might be necessary.
And it became clear that if I was going to have her best buy-in, we needed to do it sooner rather than later.

As a social worker, I am a firm believer in the mind-body connection.  It was really important to me that Susan go into the surgery -- if needed -- with the most positive attitude possible.  

So...I put on my social worker hat and started trying to shake test results loose...and then I e-mailed Susan's pediatric neurosurgeon, who called late the very next day to review test results and make a plan.  That was Thursday, February 19th.  It did not take long for him to list the various concerns that supported his recommendation that Susan undergo a tethered cord release.  When I questioned him, he admitted that there was no way to know for certain whether or not Susan's spinal cord was truly tethered, but, he assured me that a tethered cord release would address the issue both now and in almost every circumstance in the future.

He offered to perform the tethered cord release the following week, and asked me to call his nurse the following morning.  I reminded him of Susan's participation in the PRROTECT clinical trial and we talked about options.  After some discussion, he said he would accommodate whatever the wishes were of the doctors running the clinical trial.

Early Friday morning, I got to work.  I e-mailed the PRROTECT team outlining the situation, the pediatric neurosurgeon's proposed surgical intervention and explained that the neurosurgery team would schedule Susan's procedure either early Tuesday morning (with the option of her maybe taking her peanut dose Tuesday afternoon or evening) or early Thursday afternoon (with the option of her taking her peanut dose very early Thursday morning).  

We exchanged e-mail, and I was initially discouraged to learn that two of the three doctors running the PRROTECT study were either in Dallas, Texas at the 2015 American Academy of Allergy, Asthma & Immunology conference or en route.  Of course, I thought. 


But, actually, they weren't unreachable (of course, of course -- they are always available -- what was I thinking?) -- and, in fact, they were together with all of the great minds, including many, many doctors involved in the PRROTECT study from other sites.  They planned to put their minds together, but needed time. 

Late Friday morning, I spoke with the pediatric neurosurgeon's nurse to explain that we needed time so the allergists could formulate a plan.  She suggested that she hold both surgical slots for Susan while the PRROTECT team made a plan. 
  (Ummm...incredible.  Unreal.  I think I thanked her about 100 times.)

By Saturday afternoon, the doctors from the PRROTECT team had a plan.  Hold the dose the day of surgery.  Dose at 50% (1000 mg of peanut) the first and second post-operative days and then, if tolerated, increase to the full dose (2000 mg) on the third post-operative day.  We agreed that Tuesday made a lot more sense than Thursday, as the doctors from the PRROTECT study would be able to more easily follow Susan during the week.  

I liked the plan, and I really liked the fact that some really, really good minds had formulated the plan.

Susan's surgery was yesterday.  For anyone who has never kissed their child as they are wheeled off to the operating room, let me tell you -- it is one of the most difficult things I have ever done.  I was immensely thankful to the anesthesiologist who started peppering Susan with questions about the difference between figure skating jumps as he wheeled her away, and fought the urge to chase them down with her EpiPens (I knew they would have epinephrine in the OR, but, still.)

Waiting for Susan to come out of surgery was almost as hard as sending her off.

But let me take a moment, here, to say that I was acutely aware as I sat in the surgical waiting room on the seventh floor (which is where the more serious operations are performed), of how fortunate we are to have three basically healthy children.  (Yes, Susan's food allergies are difficult, and have changed and shaped her life immeasurably...but, as I sat amongst parents whose children were undergoing their umpteenth surgery, and next to parents whose toddler-aged son was going to be in surgery for 7 or more hours, I offered up a respectful thank you for the health of our children.)

Of course, I saw Susan's pediatric neurosurgeon long before I saw Susan.  He told me that the tethered cord release went very well.  He was very, very, very (did I say VERY?) pleased with his incision.  He explained that a good incision closes and heals well, which reduces the risk of spinal fluid leak, infection, and future tethered cord issues.  Later, he actually told Susan the incision wouldn't show -- even in a bikini.  


When it was time for Susan to be admitted, I was surprised to learn that she would be on the 19th floor, which is the same floor the Clinical Research Unit (CRU) is on.  Her room in the Acute Care Unit is just steps from the CRU!  

Yesterday afternoon, we saw the allergist from the PRROTECT study who is following this particular part of Susan's journey.  She reviewed Susan's chart and shared with me some very new anecdotal news from the 2015 American Academy of Allergy, Asthma & Immunology conference -- that NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and sometimes opioids have adversely affected subjects' tolerance of their daily allergen dose.

The things we have learned...hormones and pain medications can both adversely affect tolerance of one's allergen. 

The PRROTECT doctor's timing was good, because the anesthesiologists (who manage post-operative pain in the Acute Care Unit for the first 24-48 hours) and Susan and I had just been talking about pain management.  (Fortunately, Susan has been as comfortable as possible given that she has to stay flat -- on her back or in the same plane on her side.)  We made sure the doctors all understood our desire to avoid NSAIDs and opioid-based pain medications as much as possible (Susan had already had one dose of a NSAID immediately following surgery, in the post-operative recovery room) and had a PCA with an opioid-based pain medication, but, she hadn't used it yet.

We agreed that Susan would take her peanut dose per the plan laid out...and it was at that point that I realized that even though I never intended to write about this part of Susan's journey, it is impossible not to -- and it is crucially important to document what her experiences are, as even though she is the first PRROTECT subject to undergo major surgery while in the study, she is surely not the last child undergoing oral immunotherapy to have surgery...

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.