Photo by Rebecca Gould Photography

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...


  1. So beautifully written, Caryn. So proud of Susan, and her perseverance in wanting to continue this journey. What an amazing family. What an amazing young lady. What an amazing possibility. <3

  2. I found your blog through our mutual friend, Phyllis. Susan sounds like an amazing little girl, and you can tell her that a total stranger, who is 36, isn't even brave enough to give herself an epi-pen like injection! She has motivated me to try tonight, instead of cowering as my husband does it! Good vibes from Atlanta on the trial!

  3. Caryn,

    You have the most amazing way of weaving your story.. I was at the edge of my seat.. again.

    Susan.. you rock it hard girl!!!

    oh.. and Super hero Paul gets a gold star too!

    Kudos to you guys for surviving and THRIVING... and so much love.

    Squeezies for you all!