Photo by Rebecca Gould Photography

Tuesday, February 18, 2014

In Susan's Head

Many people have wondered about Susan's bravery in the face of peanut (and then her Epi-Pen) last week.  And in all honesty, even though she is my daughter and I live with her, I, too, have found myself turning her calm over and over in my mind -- in wonderment and in awe. 

Yesterday, with nearly a week between Susan and the food challenges which ultimately lead to her self-administration of her Epi-Pen late that night, I decided to try to better understand what was going on inside her head during the food challenges. 

I do not generally believe in wearing my professional "social work" hat with my children (or spouse, for that matter!), but, occasionally, I find myself with a strong need to put that hat on.  Before doing so, I gave Susan fair warning, saying, "A lot of people have wondered how you could be so brave last week.  Can we talk about it?" 

She was nonchalant -- the expression on her face reminding me much of the expression on her face as she ate that chocolate pudding last week -- knowing it MIGHT contain peanut protein.  "Sure...but, I wasn't really being brave." 


Not brave?!?  We know several grown adults living with food allergies who have openly admitted to Susan in the last week that they would not be brave enough to do what she did...a true litmus test for me of her bravery, as those adults know what it is like to live with life threatening food allergies...and have all experienced anaphylaxis first hand. 

"Tell me more..."

"Well, as I was eating the pudding, I knew that either something would happen -- or it wouldn't.  I knew there were two nurses and a doctor there in case something happened, and I trusted you and them to take care of me." 

I marveled at the incredible trust this 11-year old girl placed in all of us.
And I took a moment to be thankful that this child, who could be fear-filled and anxiety-ridden, is not.

"Still, it must have been at least a little scary eating something we have spent so many years avoiding."

With the calm clarity of an old soul:  "Well, maybe a little, but, I really didn't think about it that much.  If there is ever going to be a treatment or a cure for food allergies, someone has to do this stuff.  And if I am lucky, the trial will help me -- other people, too."

"Yes, I so hope this trial helps you -- and that it moves research toward a cure forward.  How were you feeling when you realized you were going to need the Epi-Pen?"

"Well, I was wishing I wouldn't have to have it, but, I also knew I wanted to know I could do it for myself.  I'm so glad I did it with you -- and next time it won't take me two tries."

As is the case with every truly brave person I know, Susan does not see herself as brave -- she is filled with resolve and certainty and is just doing what needs to be done.

Wednesday, February 12, 2014

Beyond Brave

-- Benadryl

-- Benadryl

-- Epi-Pen
-- Epi-Pen
-- Benadryl

-- Prednisone

(And so no one has to read too terribly far ahead, after all of the above, Susan then slept and went to school today -- albeit a bit late.)

While the hours since the conclusion of Susan's second food challenge have become a bit of a sleep-deprived blur, I'm fairly certain that's how things went.

While driving home, I realized Susan was fighting sleep.  Knowing how badly she wanted to eat at Zapatista, I proposed we "save" that outing for a day that had not been so long.  Susan readily agreed to a new plan -- Cheese Potatoes from Michael's Chicago Style Red Hots.  They know us well, and easily and happily prepare our food "in the back," using ingredients that could not possibly be cross-contaminated with...anything.  I called our order in...and as we were pulling up, Susan gasped, saying she felt like she was going to throw up.

I pulled over, hit the "open" door on the van and instructed her to please, please NOT get sick in the car.

I should inform -- I do not do vomit well.  I DO NOT do vomit at all, if I can help it.  And yes, I do have three children, but still...

I never have done vomit well.  Even as a child, I would try not to vomit -- I hate everything about it.  And, more than 30 years later, I still do.

[Quite possibly the biggest spousal disagreement we have ever had was over vomit -- my husband left me and our three small children (who ALL had the stomach flu) home to attend his cousin's wedding.  I was outraged...and while a small, reasonable part of me "got it," I could not get over the fact that I was being left to deal with three small vomiting children and mounts and mounds of vomit-filled laundry.]

I called the on-call doctor, who, thankfully, was the same doctor who monitored Susan during the food challenges.  We discussed.  She recommended a moderate dose of Benadryl (we were within four hours of the end of the food challenge, but, they had not given the maximum dose, not wanting to completely knock Susan out.)  The moment passed.  Thankfully.  Susan took the Benadryl, which she had tucked into her purse, along with her Epi-Pens.

We picked up the potatoes (hers and mine, identical).  Hungry after having had little to eat beyond chocolate pudding, Susan started on hers in the car, finishing after we arrived home. 

We pulled out the trundle bed in her room (NO WAY was I letting her sleep alone) and I tucked her in.  She read, finishing her English homework, and then snuggled in, with Ga, her 10+ year old teddy bear who has been with her through thick and thin. 

Thirty minutes later, Susan bolted out of her bed, vomiting on her way to the bathroom.  (Everywhere, I might add, as my husband/her father -- hero Paul had to clean it all up).  Uncertain about what to do, I placed my second call to the on-call doctor, who promptly called back.  After some discussion, we had a plan:

* Let Susan, who was feeling better, sleep.
* Administer more Benadryl (prophylactically) at 10:30 pm.  (I set an alarm, even while feeling fairly certain I would not fall asleep...)
* In the case of another episode of vomit, or any other additional symptoms, administer Epi-Pen immediately.

I reviewed the plan with Susan and tucked her back in, thinking that THIS was way, way harder than I envisioned...and wondering exactly how much Susan peanut Susan had in her...and wondering what might happen to it "all." 

We settled in.  I was reading.  Susan was dozing -- fitfully -- when she bolted out of bed, vomiting again minutes before 10:30 pm. 

Susan and I both knew what that meant -- and she returned to her bed and picked up one of her Epi-Pens...removing it from the case, uncapping it, and holding it tightly in her right hand.  As I looked at her, she looked at the Epi-Pen...poised above her thigh...frozen.  Knowing it needed to be done, I urged her on, offering to help, to hold her hand, to hold HER.  Drawing a deep breath, Susan stabbed the Epi-Pen into her right thigh -- immediately gasping and pulling it out immediately (way, way too fast for the life-saving medication to enter her blood-stream).  She looked at me immediately, realization dawning, and tried to jab it back into her thigh, but the protective shield prevented her from doing so.  As she looked at me, I looked back at her calmly, hoping my fear and racing heart did not show.  I gave her another Epi-Pen, saying that we had "plenty" and that she could just "do it again." 

Blood was streaming down Susan's leg -- and as she wiped at it with a tissue, I felt fear grabbing at my heart -- I wasn't sure we had time, and I didn't want to take the opportunity from Susan, but, I also did not want our goal of her self-injecting to put her at risk.  I sat next to Susan, watching her -- seeing a mixture of fear, uncertainty and resolve on her beautiful face.  And yet, precious seconds were ticking away...

I took a deep breath and said firmly, "Susan, if you are going to do it, you have to do it NOW."  She looked back at me, uncertainly.  I offered to hold her, to hold her hand, to help her...and she replied, "No, I need to do this myself."  And she did.  Incredibly, she did -- injecting herself, counting slowly, slowly to ten -- and then massaging her thigh.  Perfectly.  Perfectly, that is, if there is *ANYTHING* perfect about having to inject oneself with an Epi-Pen.

I have no words for how proud I am of Susan's bravery -- in all of this.  And most especially, I am proud of her for self-administering her Epi-Pen.  And, I am thankful that she now carries with her the knowledge that she has DONE IT.  Nothing will ever change that incredible fact.  I hope -- desperately -- with every shred of my being that this is not knowledge she will ever need to rely on, but, as a mother who dreams of freedom and opportunity that is foreign to Susan, I am thrilled beyond words that she carries this experience -- this very, very powerful knowledge -- with her.

As I sat with Susan hugged between my arms and legs on her bed, I called the on-call doctor yet again...for the third time in less than five hours.  She called me back immediately, sounding just a bit worried.  We talked.  And we talked some more.  I gave more of Susan's post-reaction medical history...and after much discussion, the doctor concluded that she was comfortable having us stay home --despite normal post-Epi-Pen administration protocol includes a "911" call and evaluation in the Emergency Room. 

She explained that she wanted to prescribe a steroid, Prednisone, which is often administered and/or prescribed during ER follow-up post anaphylactic reaction.  She explained that she hoped to avoid a trip to the ER for Susan and that she felt comfortable allowing Susan to stay home --especially with me carefully monitoring Susan.  The doctor went on to say that I did not need to wake Susan hourly "as it isn't like she has a concussion."  She further explained that I should listen to be sure Susan's breathing was "normal," and that I should "regularly" check to be sure Susan was resting comfortably.  I knew this doctor had a young child, and I knew she "got it," as I hadn't had to explain why I was sleeping on the trundle bed in Susan's room, but, still..."regularly"?

That said, I was happy to be in the comfort of our home.  I sent my husband, Paul (vomit hero/late-night trip to Walgreen's guru) out for the medication.  And we settled in.  With Susan's permission, I cancelled her morning skating lessons (I was going to regardless, but, I wanted her buy-in -- I did not want it to feel like a punishment) and I extracted myself from my turn to drive from the rink to school...

And I was wide, wide...wide awake...on the trundle bed in Susan's room, watching over her while she slept.  I started writing this, but I was distracted by my responsibility to her.

As I lay there, looking up at her, I found myself thinking about my toothbrush and contact case...the talismans to ward off hospital admission.  I could not help but think that maybe I DID want the security of the ER...

I gave up writing, and lay there watching Susan, listening for her breaths, measuring each rise and fall...until eventually, at about 3:30 am, I felt reassured enough to dim the light more and allow myself to rest...

When Susan woke up at 7:10 am this morning, she immediately began planning to go to school.  I felt a fourth call to the on-call doctor was in order...and she was not at all surprised to hear from me...acknowledging immediately that she had been thinking about school.  She did not make my wonder...explaining quickly that she felt it was fine for Susan to go to school as long as we could ensure that she did not over-do it...and wanting to be sure we had a plan in place in case Susan was not feeling well...

And so, my brave, brave, beyond brave Susan gathered herself, ate breakfast and went to school (a bit late, racking up a tardy in addition to a mostly-missed day of school two weeks ago for the clinical intake and her first clinical-trial related absence yesterday)... I honestly think she is more concerned about attendance than anything else right now.  And for that, I am thankful.  Ever so thankful.

Oh -- and in case you are wondering -- I asked her this morning if she still wanted to do this, and she said, resoundingly and clearly -- YES.  And while it was scary and Susan, I have hope and optimism for the future, and I want to go forward, too.

Some day, just maybe...

Tuesday, February 11, 2014

One Day. Two Food Challenges.

As we crept downtown in morning rush hour traffic, that feeling in the pit of my stomach grew...and the quiet voice that had been persistently asking "What if?" got louder and more persistent. 

I briefly tried to engage Susan in a discussion about what was about to happen, as I found it hard to believe that she was not experiencing some anxiety...of some sort.  But, she really was not very interested in that line of conversation, preferring to tell me about the house she was building for me on her Minecraft land.  So, I let it go, not wanting to impose my fear and anxiety on her.

When we arrived, the research nurse checked Susan over carefully -- vitals, weight, etc.  And then the doctor who would be overseeing the food challenge also examined Susan.  They asked her to provide a urine sample (to ensure Susan, my innocent 11 year old was not pregnant -- and that gave me pause!).  After all the examinations were complete, they inserted an IV and drew blood. 

We knew the IV was in place in case of a need to administer medications quickly and directly.  I do not like to think about it, but, swelling and constricting of the throat is often present during an anaphylactic reaction...making it hard to swallow life-saving medications, like Benadryl.  After the IV was in, we talked about what kinds of medications would be administered through the IV and what would happen if Susan needed an Epi-Pen.  The nurse explained that it is best to administer epinephrine (that's what's in an Epi-Pen) through an injection, and explained that if that became necessary, they would use an Epi-Pen.

And then I asked one of the questions that had been burning inside me -- "If Susan needs an Epi-Pen, and she is able to, can she be allowed to self-administer it, please?"  As the nurses and doctor looked at me, I rushed on (Susan and I had talked about this, and we were in agreement...but, I knew I need to be the one to advocate on her behalf.) -- explaining "Susan has not had an anaphylactic reaction in years, and when she did, I administered her Epi-Pen.  We want her to know she can do it -- to have actually done it."  (What I did NOT say was that there, in the Research Center, attached to Lurie Children's Hospital, was about the best place I could think of for Susan to "try it.")

The nurses and doctor looked at each other...and agreed...a bit hesitantly, and then more confidently, as the research nurse explained that they had only ever had one other child self-administer, but that as long as Susan was able to do it -- and wanted to do it -- they would let her.  I sat there feeling pleased while all the while hoping against hope that we would NOT have a reason for Susan to use her own Epi-Pen. 

The careful protocol everyone involved followed made me feel better -- calming that bad feeling in the pit of my stomach and quieting the voice in my head.  And, while I noticed emergency medications and assorted medical equipment and bags tucked behind the chair Susan would be seated in for the duration of the food challenge, I tried not to look too carefully.  I liked knowing it was all there, but, did not want to think too terribly much about it.  I found calm in the organized, orderly feel of it all.  Before beginning, we reviewed the protocol for the food challenge. 

It was simple enough.  To finalize Susan's enrollment in the clinical trial, she had to "successfully" complete two food challenges.  Each food challenge would consist of two sets of five cups of chocolate pudding -- in one set, there would be incrementally increasing microscopic amounts of peanut protein.  The other set of chocolate pudding cups would be "pure."  "Success" in the food challenges was simple.  Susan could not have a reaction to the chocolate pudding that was pure and had to have an observable and quantifiable reaction after consuming the "contaminated" chocolate pudding.  Because of the double-blind nature of the study, no one involved knew what was going to be presented to Susan during either food challenge.

With two nurses and a doctor in the room, the food challenge began.  After ensuring Susan was ready to begin, the nurse presented her with the first cup of chocolate pudding.  She powered it down (she had been instructed to eat a light breakfast and had already skated for an hour that morning, so, I am sure she was hungry).  And we waited.  And we waited some more.  Nothing happened.  We reached the 20-minute mark and she was presented with the second cup of chocolate pudding.  We waited again, and, again, nothing happened.  The nurse carefully questioned her, examined her skin, checked her vitals -- nothing had changed.  I started to think maybe she was eating the "pure" or "placebo" pudding.  So did she...and, honestly, I think the nurses and doctors were starting to think so, too.

The nurse presented Susan with the third cup of chocolate pudding, which she again powered down...and then, following the nurse's example from the first two cups, scraped it clean.  I was amazed as I watched her confidently and bravely eat something she knew might contain the very thing that could kill her.  We waited some more.  We played in my Minecraft house.  We talked about the Olympians we actually know (Jason Brown, Brian Hansen AND Emery Lehman).  We showed the nurses and doctor a video of Susan's first ice show solo.  We relaxed.  The doctor excused herself to return a page...and then it was time for Susan's fourth cup of chocolate pudding, which she again ate confidently...and we resumed our hang out in Minecraft land.

I do not know what I thought would happen, but...this...was not it.

As Susan finished off the fifth cup of chocolate pudding, I saw the nurses and doctor conferring quietly, and gathered that they were contemplating offering Susan the second food challenge during our visit.  Since Susan had nearly completed the food challenge without need for antihistamines or other rescue medications, she was eligible to move forward with the second food challenge.  As the doctor and nurses discussed that option, they calculated carefully the potential duration of the second food challenge and determined that even if Susan was presented with all five cups of the chocolate pudding, we would be done around 5:30 pm -- acceptable to them if it was to us. 

While there was no way to know for certain, it DID seem rather certain that the first set of pudding cups had been "pure," or the "placebo"...and I welcomed the idea of getting the second food challenge (which I believed was likely to contain peanut protein) behind us.  Susan felt the same way...and so it was decided.  We would observe the two-hour wait at the end of the first food challenge and then begin the second.  That unfriendly feeling in the pit of my stomach was back -- with a vengeance.

As the second food challenge began, Susan bravely ate the first cup of pudding -- without hesitation.  As I watched Susan, I marveled at her composure, her confidence, her calm.  I wondered how she could spoon that pudding into her mouth as she did, believing it was likely to contain peanut protein.  As the next few hours passed, I would begin to wish for a crack in Susan's composure...but, I did not know that then.  The requisite 20 minutes passed after Susan ate the first cup of chocolate pudding -- and nothing happened.  We waited.  We hung out in Minecraft land, in the house Susan had created for me...and we waited.  And still, nothing happened.  As the nurse prepared to give Susan the second cup of chocolate pudding, I voiced what I am sure was in everyone's mind.  At that point, Susan had surely eaten a microscopic amount of peanut protein -- the very thing we have spent the vast majority of her life trying to prevent.  And yet, there was nothing -- no evidence of reaction.  How could it be that she would have a reaction to peanut dust on an airplane, a reaction to a friend's post-PB & J sandwich breath on her, a reaction to some unknown something in a movie theater and NOT react to that first cup of chocolate pudding?  I will never know.

And so, after the nurse rechecked her vitals and carefully questioned her about how she was feeling and scrutinized her skin, she presented Susan with the second cup of chocolate pudding -- which Susan again ate with confidence.  I worked hard to hide it, but I was growing increasingly nervous.  I felt certain we were on the precipice of something -- and I worried we would go from nothing to a major, full-blown reaction in seconds...despite the care and attention.  And yet again, nothing happened.  So, we hung out in Minecraft land a bit more...and we waited.  And we waited some more.

And then, just before it was time for Susan to eat the third cup of chocolate pudding, the nurse observed a few tiny hives on Susan's back.  Several sets of eyes observed the hives, and then, the nurses carefully checked the rest of Susan's body, and took Susan's vitals.  As there were no other hives, and the ones present were not "typical" (hives typically look more like a rash rather than individual small bumps), and there was no other evidence of a reaction, it was time for that third cup of pudding...

Susan again ate the pudding calmly, with confidence.  We resumed our position in Minecraft land.  And then, shortly after Susan scraped the third container of pudding clean, I saw a slight change in her facial expression -- the type of thing only a parent can see.  When I asked her how she was feeling, she said it was "hard to swallow."  As that particular complaint was not on the list of symptoms that could trigger successful completion of the food challenge, the nurses and doctor again carefully examined her.  The nurse took her vitals and noted a few additional hives, but "not enough" to stop.  Susan stoically reported that she was "OK" while classifying her difficulty swallowing as a "2" on a scale of one to five.  I noticed that she had abandoned her iPad mini.

That voice in my head was becoming increasingly frantic -- and insistent.  While it was clear to all of us that Susan was having a reaction, it was also clear to all of us that her reaction was not meeting the criterion of the clinical trial protocol for the food challenge to be labeled a "success" and stopped.  Treatment for her symptoms had to be withheld until it was clear that she had had a reaction that met the criterion -- or not.  I did not know what was going to happen, but, I was getting really, really worried...I had a very real fear that Susan's stoicism and reserved nature was masking what was really happening and I feared that the next bite (or the bite after) would be the one to bring the world crashing down around us.

And yet, the doctor and nurses were very, very careful.  I knew we were nearing something (but what?!) when the doctor suggested Susan "only" eat half of the fourth cup.  I wondered aloud if Susan would have "enough" of a reaction to be enrolled in the clinical trial.  In response, the nurse reminded me that Susan had been presented with microscopic amounts of peanut protein.  And, she noted that there were sometimes "failed" food challenges, in which a subject did not meet the "reactive criterion" for enrollment in a certain study or clinical trial.  I let that idea roll around in my head -- barely able to believe that Susan might not be appropriate for this particular clinical trial after all.

Wait -- what WAS the purpose of all might wonder?  Well, it was two-fold -- the first was to meet the "gold standard" of food allergy diagnostics -- a documented reaction to consumption of the allergen.  The second was to establish a "threshold" -- to establish a "starting point" for future food challenges and exposures.  As the number of cups of pudding I believed to be contaminated with peanuts Susan consumed increased, I found myself worrying, too, about what the threshold might be when we got done...

And so, with countless threads of worry running through my mind, I sat next to Susan, scrutinizing her, watching her withdraw inward, seeing something indescribable on her face -- I KNEW something was not right...but, between Susan's stoicism and the vagueness of all that was wrong and not on the list of reactive symptoms, there seemed to be no way for her to articulate it.  Knowing how stoic she can be (she reported to her third grade classroom with a broken hand several years ago after a fall on playground equipment before the school day began), I encouraged her to talk about how she was feeling.

So, on we went -- with Susan eating half of the fourth cup of chocolate pudding.  A few more hives other locations...and she complained more about the difficulty she was having swallowing and then she voiced that she was "very thirsty."  Again, none of those symptoms were "enough" to successfully conclude the food challenge.  So, on we went.  After eating the first half of the fourth cup, Susan noted that her stomach was hurting "a bit."  Nothing else had changed, and she was willing to continue, so, after delaying a bit to allow any other symptoms that might be developing to become clear, it was time for Susan to eat the rest of the fourth cup of pudding. 

Again, there were changes, and a subtle increase in Susan's blood pressure, but "not enough."  I felt the tension of the day mounting and fought back a wave of tears as the doctor again suggested she start with "only half" of the fifth cup of chocolate pudding.  It was later than any of us had anticipated due to subtle and then more purposeful delays to allow symptoms to develop...and I realized we were unlikely to finish before 6:00 pm.  And still, even though the nurses and doctors were certainly aware of the passage of time, they were in no hurry, taking purposeful and deliberate care -- assessing every step of the way.

Even though she was not feeling well, Susan ate the first half of the fifth cup of chocolate pudding with the same calm she had eaten every other spoonful.  I was amazed...and so, so scared.  I started talking to the nurses and doctor about her stoicism.  I wanted them to recognize that the subtle changes we were seeing in Susan were significant.  I encouraged Susan to talk to us about how she was feeling...and she told us her stomach was hurting more, classifying the pain as a "2 1/2" on a scale of one to five.  Still "not enough."  The nurse suggested a walk, and I followed as she and Susan walked the length of the research unit of Lurie Children's Hospital...wishing for something definitive.  We returned to the room and as I looked at Susan, I saw hives on her chin...and then I saw the glimmer of tears.  As I gave voice to her struggle for composure, observing, "You look like you are trying not to cry" the tears began to fall.  She admitted to intense abdominal pain and between the hives on her face, the loss of her composure (in start contrast to her composure throughout the long, long day) and the significance of her pain, we were done.  Thankfully...and safely done.  WAY less scary than I anticipated.  So controlled.  So carefully, cautiously observed."  The nurse administered Benadryl and we began the two-hour observation period before we could leave. 

Susan perked up.  She resumed work on my Minecraft house until she exhausted the battery on her phone, then her iPad, and then my phone (which was running off a nearly depleted boost).  One of the nurses found Susan a charger for her phone (just one of the many lessons learned -- ALWAYS pack power supplies...)...and I relaxed...and started mentally ticking down the minutes until 6:30 pm, when we would be free to leave.

For hours, we had been suspended in time, but, once the challenges were done, time passed more quickly than I would have expected...we reviewed protocol and future appointments and Susan demonstrated that she knew how to use an Epi-Pen.  And then, we were done!  Remarkable.  It hadn't been anything like I feared -- and I was incredibly thankful for the nurses and doctor, who spent virtually the entire day with us, observing, monitoring, checking and rechecking Susan to ensure her safety every step of the way. 

It was 6:30 pm, and we had been in the same space for more than nine hours -- and it was time for us -- and the nurses and doctor -- to go home.  Susan was ready for real food.  After some discussion, she settled on a special dinner at Zapatista, a favorite Mexican restaurant that has historically done a great job with our various dietary concerns and restrictions.  She was excited about the idea of using the gift card she received as compensation for her time, and I was looking forward to a relaxing dinner with her...

There's more, but, our experiences after we left Lurie Children's Hospital and headed for home merit a separate blog entry.