Photo by Rebecca Gould Photography

Wednesday, April 29, 2015

Doing "Nothing" (or Being There when Susan Self-Administers Epinephrine)

I suspect most parents would agree with of the hardest things about parenting is knowing how and where and when to let your child...go...
  [knowing there is risk of disappointment, upset, heartbreak -- even...failure]
    (knowing you could -- if your child was willing -- educate, teach...even maybe prevent some of that hurt...)

For me, figuring out how and where and when to let go of Susan is complicated by the very fact of her severe food allergies. 
I have often said that if it were just about what Susan put in her mouth, it would be easier, but, given her history of anaphylactic reactions to airborne and contact exposures to peanut, there simply isn't room to risk a "failure." 
  (The heartbreak would be mine, my husband's, our other children's -- the risks go beyond life lessons learned.)

The very thought makes it hard for me to breathe.
  For while mistakes are made -- often enough -- in life...I cannot allow a mistake to be made with my child's life.

[Until recently, Susan had never even self-administered epinephrine...and historically, her reactions have been...FAST.  Really.  Really, really, reallyreally fast.  No hives.  No skin changes.  No vomiting.  Her reactions, historically, have been of the Do-Not-Pass-Go variety -- leading directly to respiratory distress...coughing, choking, wheezing, struggling to suck air in as her throat swelled shut.  No time for error...for failure...for...a...learning curve.]

And so, we have held Susan close -- hosting countless sleepovers and play dates at our house, eating at only a very select handful of restaurants that do not have any form of peanut on the menu...making our own snow cones, ice cream and donuts...
Coaching her soccer team, managing her soccer team...
Volunteering to supervise her ice time...driving the bulk of the "carpools" anywhere and everywhere...
   ...the list goes on, and on...and the hours spent simply being present to provide a level of supervision that most parents would never...could never...dream of...add up...until they are impossible to calculate.

We sought (and then fought for) a comprehensive food-allergy policy in our school district...losing countless friends along the way...a loss that still saddens me, although I recognize now that I am rich in the friends I gained during that difficult time...and in those we have added during our food allergy journey.

We selected extracurricular activities and camps after careful, thorough, painstaking assessment...steering Susan away from any that seemed unable to meet her needs...driving her to a tiny camp in Canada run by a Canadian couple on a lot they own...the entire space peanut and tree nut free...because they are traveling the same food-allergy road we are...

Until recently, Susan had not seen a movie in a theater...
   and for years, we have driven instead of flying...putting hundreds...thousands upon thousands of miles on our van.

The clinical trial has pushed me to think long and hard and often...about where and when and how I will let Susan go...

For now that Susan is eating peanut...things should be different, right?
Now that it is -- at least theoretically -- about what Susan puts in her mouth, it should be different...

While I have always worried about Susan's safety, I have come to accept that I worry more now that she is eating peanut regularly than I once did.
Incredible (and wrong?).
   But true.
  (I believe that some day, I will worry less.  I hope.  I'm just not sure when that day will be.)

There is a growing part of me that thinks I will always worry (like any parent, just...maybe more?)...although maybe my worry will be about Susan's peanut dose...instead of about Susan's peanut avoidance?
  [For, while it is years away...I do find myself wondering...what will it be like if (when?) Susan goes off to college?  (And I hope beyond hope that what she is doing now will free her to...go without consideration of her food allergies.  Will I wait with baited breath at the time of Susan's dose every day?  I have to hope not...for that makes me wonder what, if anything, will we have gained?  So many questions without real answers.]

We have certainly gained an appreciation for epinephrine over the last year...
  and...far more experience administering it than I ever expected.

The stark reality is that while we were aware that Susan's enrollment in the clinical trial put her at increased risk for anaphylaxis (that very fact is spelled out clearly in the consents, so as to leave no room for confusion), there is a gaping chasm between awareness and knowledge and the moment that anaphylaxis begins.
  Time slows as the medical emergency begins.

I have written about not ever hesitating to administer epinephrine, and yet every second drags, elongated, as the reality of the danger Susan is in sets in.

There are too many stories about children and teens whose epinephrine was administered too late...
  (with devastating, heart-breaking, newsworthy consequences)

With the importance of early administration of epinephrine clear in my mind, I have allowed -- encouraged, even -- Susan to self-administer her epinephrine...

  I have sat beside her, holding her, rubbing her back, encouraging her...wrapping my hand around her hand to prod forward and to assist if needed...but never once taking that EpiPen from her to administer it myself.
  In the painful seconds it has (always) taken her to gather herself -- to still her body, to get her body "really calm and relaxed" even though her "body is NOT wanting to do that" -- I have reminded myself over and over again --
I need
To be able
   to do this...

In the back of my mind, as I have sat with Susan -- doing nothing (and it feels very much like I am doing nothing even though I know some might argue I am not doing nothing -- but I am very much aware that I am doing nothing to stop the anaphylaxis threatening to take Susan's life) -- I have always known that if I felt Susan was hesitating too long, I would step in and do it for her...
But who am I to know what is too long? least once...probably, I waited too long.
  We were fortunate, in that the epinephrine worked...
  We did not have devastating consequences.

Always, every single time I have been with Susan -- listening to her wheeze, hearing her increasing difficulty breathing...looking at her red, swollen, puffy and teary face...sitting there...doing nothing -- I have reminded myself of how
absolutely crucial it is that Susan know how to self-administer her epinephrine. 

If Susan has to 6, or 7...or even 10...I have to believe that is better for me to sit with her doing nothing while she counts...and allow her to self-administer her epinephrine with the hope that every single time she self-administers her epinephrine her confidence, her certainty, her...resolve...increases.

At least that's what I tell myself as I sit by her...
  (while also telling myself I will never wait too long -- knowing full well that no parent ever intends to wait too long).

The sitting by and watching -- doing nothing -- [for as much as I want to say supporting, holding, rubbing...the truth is that I am watching, hoping...trying to hold myself steady and not take an important learning (practicing) moment away from Susan] is terrible.
I wonder about what kind of parent I am...

It is agonizing to sit there -- knowing Susan's throat is swelling, that her body is in overdrive -- fighting peanut, fighting itself.
It is agonizing to hold myself still (doing nothing) -- helplessly standing by...hoping beyond hope that by doing nothing, I am, in fact, doing something incredible.  (Of course, I could take over...but I know as I sit there that to take over would be taking something important away...)

And so...I have held myself steady on four separate occasions -- waiting, watching...doing nothing while Susan self-administered her epinephrine.

After reading Susan's blog entry about her thoughts on self-administering her epinephrine, my dear friend who was with Susan the day she had an anaphylactic reaction after eating her 1/2 of a Snickers Bar texted me, "Great blog...And I think you should write a blog on what it is like to be you in those moments."  (You asked for it, Susan Millner -- here it is.)

And then she added, "Susan hesitating before she epi'd scared the crap out of me.  I didn't want to have to take over (for her sake) in the worst way.  And so then I counted for her (and now I feel badly for not letting her do it her way).  But I think I knew in that moment that her life (the life of someone else's child) was in my hands and so I did what I thought I had to do."

I responded that I was so glad that she was the one with Susan, and added that Susan and I had talked that morning about how there is a "learning curve (my daughter's term).  I am grateful my friend Susan was with my Susan that day.  I am grateful she held back while also urging Susan on.  It is impossible to describe how terrifying it is to sit there and watch (doing nothing to really, truly change anything) -- knowing your child's life is in danger...and knowing you hold the medication that just might save her life.

As hard as it has been to sit there...doing nothing multiple times...
I am thankful beyond measure that Susan has had multiple opportunities to self-administer her epinephrine. 
I am thankful beyond measure that I -- or an adult she trusts (and sometimes even a doctor) -- has been with her each and every time.
So far.
But some day...we won't. 
  (Not if Susan gets to live the free life she dreams of.)

And so, as hard as it is to sit there, doing nothing...
   (and yes, I know it isn't really nothing that I am doing...but, that's how it feels)
I believe trusting Susan -- allowing Susan to self-administer her epinephrine -- is one of the greatest gifts I can give her.

And so, if there is a next time (and if I am really honest with myself, I think there probably will be), I will sit with Susan.
I will hold her or rub her back...
I will encourage her if she needs...but I will also hold myself back...doing nothing...
   (allowing Susan to self-administer her epinephrine)...
   while I do what I already know will feel like...nothing...(letting her...go...trusting her to find her way).

Sunday, April 19, 2015

Susan: Self-Administering Epinephrine

I suspect (strongly) that there aren't many twelve-year-olds out there who have to stop to think how many times they have self-injected their epinephrine.

For better or for worse, Susan has become one of those kids.

We attended -- as a family -- the screening of Jack Yonover's incredibly powerful documentary about life with food allergies -- That Bites! -- earlier this week.  After the screening, Susan had a pressing list of questions for Jack.  Since she had FOUR questions she wanted to ask him, I suggested she wait to talk with him until after the general question-and-answer session was over.

She did...and tracked him down while I was talking to several mothers of children with severe food allergies.  I didn't get to hear their conversation, but I know that one of the things she wanted to ask him was whether or not he had ever needed epinephrine...and if he had...if he had ever self-administered it.  (I wasn't at all surprised that she wanted to ask about that -- terrible as it is to have an anaphylactic reaction, I do think there is a part of Susan that is just a tiny bit proud of the fact that she has self-administered epinephrine numerous times.)

In the car on the way home, we talked.
She told me she and Jack and his mother talked about how many times Susan had self-administered her epinephrine.  Having addressed this same question earlier in the week, I was curious to see if Susan and I arrived at the same number.  We did.

Susan has self-administered epinephrine four times since starting the clinical trial.
Or maybe we should say five times.

There is the small matter of the fact that the first time Susan tried to self-administer, it took two Epi-Pens (we don't count the first EpiPen when we are talking about how many times Susan has needed epinephrine during the clinical trial -- but when it comes to talking about how many times she has self-administered her epinephrine, I think it should count...after all, Susan found the courage, swung hard and stuck that needle in her thigh.)
We'll call that one...and two.

A friend opined that the first time Susan self-injected (and pulled the EpiPen out too quickly) doesn't "count" because she pulled it out before it could work.  I disagreed...and I still do.  If anything, that one counts something like double.  For after she pulled it out, she had blood running down her leg...yet still found the fortitude to self-administer a second EpiPen slightly above where she had administered and then immediately pulled out the first...

The third time Susan self-administered her EpiPen was in the Clinical Research Unit at Ann & Robert H. Lurie Children's Hospital during her failed 4000 mg (17 peanuts) challenge in January of this year.

The fourth time Susan self-administered her EpiPen was with a friend of mine, in a local restaurant, the day she reacted to her half of a Snickers Bar -- in February of this year.  

The fifth time Susan self-administered her EpiPen was...just last week, when she reacted to her 8 1/2 Peanut M & M's at home.  That reaction came as a shock -- as I typed that, I realize that anaphylactic reactions pretty much always come as a shock...for no one expects to have an anaphylactic reaction (not even during a food challenge, really...)

And then there is the time when the doctor overseeing Susan's (failed) rapid desensitization to peanut became alarmed by Susan's hesitation and took over, placing her hand over Susan's to inject the EpiPen.  (That came earlier, in May of 2014, and it stands apart in my mind because the doctor helped...)

The total number of EpiPens used since Susan was enrolled in the clinical trial is six.
That's a LOT.
Reallyreallyreally alot.

Apparently Susan and Jack, and Jack's mom talked a bit about EpiPens -- and Jack's mom made the observation that while they buy the EpiPens (which are expensive! -- that's next on Susan's list, by the way) and never use them, Susan is distinctly in the habit of using them. 
I hadn't thought about it like that.
  (While we once had an incredible stock-pile of expired EpiPens that we practiced with about once a year -- usually on Mother's Day -- injecting a single poor orange with more epinephrine than any orange needs...we now...don't.  Quite simply, we use Susan's EpiPens before they expire.  Regularly.  And that's a strange feeling.)

I must say, I've been in Jill Yonover's shoes, and honestly -- I much prefer those, but, for now, I walk the path Susan has chosen. 
And while we haven't had to worry about expired EpiPens recently, I hope some day, we'll be back to having a stockpile...

(As an aside, Susan told me that she told Jack and his mother that the clinical trial supplies replacement EpiPens to those who use them.  And she's right -- at least for the first one.  I haven't ever asked for replacement EpiPens -- we have good insurance, and with the $0 co-pay coupon, we find ourselves able to replace the EpiPens without out-of-pocket expense, unlike many others.  Being well aware that there are some who struggle to afford to replace expiring EpiPens, I can live with things the way they are.)

As we were driving home, I took advantage of the quiet darkness -- a great time to talk openly and honestly with my nearly-teen -- and asked her if she had ever thought about sharing what it is like to self-inject with others.  I didn't have to explain my line of thinking, for she immediately realized the tremendous value in her talking about what it is like to self-administer epinephrine.

And so, in Susan's words:

The moment I realize I need my's a bad moment.

I know I can do it.
I know I will do it.
I don't want to do it.

No one wants to do it.
But, I know I will do it.

It is really, really scary to realize I need epinephrine.
I feel like I know the EpiPen will work and I will be fine (...even though I know it doesn't always, at least not for everyone, and the spring mechanism fails sometimes, too -- at least that's what I have heard). this point, I feel like having done it all these times makes me trust it more...
  Since it has never not worked for me, I -- trust it...

Actually, since I know there is a certain number of times -- an average -- number of times the EpiPen doesn't work --
(either because the spring mechanism fails or because the epinephrine isn't enough
I probably shouldn't feel that way.
I'm probably getting close to that number -- whatever it is -- so maybe it would be better for me not to think that way...
(to believe in the EpiPen and epinephrine)

Every time I have needed epinephrine, I have hesitated -- not long...
And I know my hesitation makes my mother nervous, anxious.
  (She thinks maybe my hesitation means I won't actually do it, but, she doesn't need to worry.)
After the last time, I told her I would always do it, even if I hesitate.
It is mentally hard to self-administer my epinephrine.
When I hesitate, I am finding the courage to do it...
It is hard to explain, but, I need a few seconds to get my body really calm and relaxed, which is so super hard because my body is NOT wanting to do that -- when I need epinephrine, my body is feeling alarmed, and not good at all.
The last time I self-administered my EpiPen, I counted to 6.  After, my mother asked me if I knew I was going to count to the number 6.
I counted to calm my body.
I counted so that my body would be ready to receive the epinephrine.

The hardest part of self-administered epinephrine is holding on to the EpiPen so that the push-back doesn't push the needle out.
  (That's what happened the first time I wasn't that I pulled it out too fast as much as it was that the EpiPen kicked back and since I wasn't ready for that,it came out.  That was terrible, because I bled all over, and I don't really like my own blood.)
  OH.  To think that in my mind, ever since that night, it was "simply" that Susan pulled the EpiPen out too quickly.

I think people think it is going to hurt when they self-administer epinephrine.
Or maybe they think that even when someone else is going to do it for them.
Honestly, it only hurts a tiny bit, and then it is over (sometimes it hurts after, but who really cares then?)
And after, I am always so happy that I did it for myself that it doesn't really matter that it hurts.

The hardest part is doing it firmly -- getting ready to hold the EpiPen in even when my body is shaking and on alarm -- that's what's hard. 
I have to say it again -- you have to know that the EpiPen is going to push back...rebound, kick is almost as thought you have to push it back in the slightest tiny bit.  I don't want to leave out a word that might help someone be prepared.
And that's what I am getting my body ready for as I gather myself -- that push back.
I let the EpiPen come out once, but I am not going to do it again.
  (I am that determined.)

Once I have administered my epinephrine, I feel better almost immediately -- within three minutes at the most, maybe faster.  It happens really, really fast -- and I am always just so glad that I did it and then I start to feel better...
  (after is so much better...)

For someone who has never self-administered before, I want to say that it is easier once you have done it once -- don't miss a chance if you have one. 
The first time is the hardest.  
And remember, you have to be prepared to really push against the EpiPen -- it really does want to fling back. 
You have to be really, really ready for it to push back.
But it is totally worth everything, because it works right away.

Now, it helps me to know that I have done it before -- I know I can do it.
I know that I will do it.

It is easier for me to be off alone with my friends because I know I have self-administered before, and I know I can do it again.

Wednesday, April 15, 2015

That Lovely Resiliency

This morning, I woke to a comment from a woman I have never met, Gail Reynolds Frank, but whom I have come to respect tremendously over the past year.  Her  12 1/2 year old daughter was diagnosed with a peanut allergy at the age of ten.  They, too, are seeking to reduce the risks their daughter faces daily through oral immunotherapy.  

She quoted me:  
While I wish it weren't so for the countless children who live in fear not of the allergen they eat but of the allergen they cannot see -- the invisible danger that lurks on doorknobs, seat cushions, tables and desks...any public space -- the number of children walking this path of fear grows daily.

...and concluded, "And that's why we do OIT:  for the ability to live more normally and participate in life.  We never lose the fear of a reaction but we gain what non-allergic people take for granted."

In the light of day, pushing forward didn't feel quite so...insane.  
I decided to go with my dear friend Phyllis Sommer's word:  COURAGE.

We eased into our morning...
-- with a jump lesson on the harness (which I recorded for the physical therapists and pediatric neurosurgeon)
-- and then a drive downtown to Ann & Robert H. Lurie Children's Hospital...
-- where we saw Susan's pediatric neurosurgeon (who cleared her completely!)
-- before we continued upward to the Clinical Research Unit (CRU) on the 19th floor...

I had plenty of time to live with the conversation in my head.

I reminded myself again and again that Susan is courageous, and that this journey of hers is just that -- a journey with a very clear goal, but uncharted territory between here and there -- that's what a clinical trial is, after all...

I decided to believe that Susan would be able to tolerate her 8 1/2 Peanut M & M's.  I had a beautiful half and eight very normal-sized Peanut M & M's (I had rejected any that looked big, or misshapen in any way...).

Since several hours had elapsed between Susan's breakfast and her peanut dose, after her appointment with the pediatric neurosurgeon, we stopped off in the cafeteria to buy some yogurt -- I joked that we needed to create a "soft landing pad" for the peanut.  Susan liked the idea...picking a tried-and-true yogurt.

The nurses examined Susan and we all marveled at the fact that Susan has (finally) gotten very adept at the lung function tests they administer before each peanut dose (she used to really struggle, and I always felt that it had nothing to do with her lung function and everything to do with her needing to have more practice doing those types of tests).
She has become well-practiced at things I would never have imagined...

They took her temperature, and measured her pulse-oxygenation.
We peered at her skin and asked her in countless different ways how she was.

She was insistent that she was...fine.

The doctor examined her -- and then gave Susan the go-ahead.  She ate her Peanut M & M's quickly...sandwiching the half between the first four and the last four (humor, folks).  I wanted to take a picture of her eating them, but she finished before I could -- giving me a goofy look while she held on to the empty bag.

After Susan finished eating her 8 1/2 Peanut M & M's, I sent a text message to a small group of friends and family who like to be really, really in the loop.  

At 9:50 am I shared, "Susan just took her 2000 mg dose of we sit."

My dear friend, Phyllis Sommer, who traveled an incredibly difficult journey with her son Sam -- who eventually lost his valiant fight against leukemia in late 2013 -- added, "and breathe."

I responded, "Yes, breathe too.  She's incredibly relaxed about the whole thing.  I'm trying not to show my nervous."  (I'm pretty sure my nerves got in the way, as I meant "nervousness."

Phyllis sent me a private text message (which I have permission to share):  "She's not scared because not matter how mature and wonderful and wise she is, she's a kid.  And so she has that lovely resiliency and forgetfulness and faith and trust of a kid."

I've pondered that all day long.
And, I have decided Phyllis is right...

   and so, I have found myself wondering -- 

if Phyllis' insight is accurate (and I believe it is)...

what must we -- as Susan's parents -- consider about her decision-making, her desire to see the clinical trial through?  Should we view her position through the lens of a child who, no matter how mature she is, has the forgetfulness and faith and trust of a kid?

Might there come a time when we -- as her parents -- have to (or should?) weigh in more heavily than we have?  For thus far, we have supported Susan's clear-minded determination to see the clinical through -- to get to a safe place, to eat peanut -- no matter how scary the journey might be.

To be clear, if we felt the risk was too great, we would step in.

In case we did not understand it at the outset of the clinical trial, we absolutely understand the importance of early administration of epinephrine at this point, and we will administer it again and again if need be (although I desperately hope that is not the case).

To be clear, if we felt the risk was too great, we would step in.

And yet, I have been aware all afternoon that we have allowed Susan's vision to lead us, to guide us, to...almost eliminate the need to revisit our original decision to enroll Susan in the clinical trial.
It is something to think about.
  (to really, really think about...)

  and so it will sit there in the back of my mind...and I will poke and prod at it...and some early morning, when it is just me and Susan in the car...on the way to the rink before most people are awake, I'll check in with her...for in the quiet of the pre-dawn hours, sometimes -- just sometimes -- it is easier to talk about these kinds of things.

And yet, for today, I have decided to simply embrace the fact that an hour after Susan took her 2000 mg dose of peanut protein in the form of 8 1/2 Peanut M & M's, we were released from the CRU...

And hour later, she walked happily into school, pleased to be arriving just before lunch...

As the day wore on, more and more people checked in with me to see how the dose had gone.  Eventually, more than twelve hours after Susan took her dose, I started to relax...for it seemed that she had tolerated it without issue...

I do not know if I will ever breath Susan's history of delayed anaphylaxis leaves me unsteady, uncertain...unclear about what to expect.

I think I am starting to understand that our new reality (while hopefully safer than our old reality), will still be uncertain...unpredictable...and always requiring that epinephrine be nearby.

Tuesday, April 14, 2015


Teachers at Susan's school will no doubt recognize this sign, as it hangs in the seventh grade science hall.  

This morning, I read comments in response to yesterday's blog post while hanging out with Susan during her one-hour post-dose observation period.  (She took 75% of her dose, which involved cutting half of a peanut...well, let's just say approximately in half.)

One comment made me pause.  
The writer has since deleted her comment, so I cannot quote it perfectly, but, what she basically wrote was, "It makes no sense to me that a food-allergic person would eat the same food they are allergic to the day after they had a reaction."  (I'm pretty sure she said it more eloquently than I, and I wish she hadn't removed it, because I really did want to respond...especially after I had processed her comment for a bit.)  

The comment stuck with me, and as I was driving Susan -- who tolerated that very approximate dose -- to school, it struck me -- The definition of insanity is doing the same thing over and over again, but expecting different results.  

I thought about that...

And then, I decided that Susan's developing sense of humor might really appreciate it.

As I started to share my revelation with Susan, she started laughing -- cracking up, in fact, -- seeing where I was going long before I completed my sentence.  And she couldn't wait to tell me about the sign at school -- which I am sure I have walked by more than once -- I've just never noticed it.

If this is truly the definition of insanity, is what Susan is doing insanity?
One could certainly argue that it is.

And yet, in life, we often talk about those who do incredible things as having "insane" schedules or commitment or will -- athletes who get up at 4:00 am to practice, or run, or study...(or skate), attorneys who put together incredibly articulate, organized arguments (because they pulled multiple all-nighters) individual who lifts an automobile or other equally large, heavy object off another in a crisis...

Is the effort to find a treatment for Susan's peanut allergy any different?

  (Perhaps Herculean efforts are needed...)

We have always known that Susan's peanut allergy is very severe --
  We were at the forefront of children with airborne and contact allergies.
  Way back when ...
(People -- even doctors and allergists -- didn't believe us when we talked about anaphylaxis on-board an airplane, in a movie the gym while playing with a girl who had eaten a peanut butter sandwich on the way to class.)

Now...(unfortunately) they do.
Now, while Susan's story is sobering, she isn't the outlier she once was.
While I wish it weren't so for the countless children who live in fear not of the allergen they eat but of the allergen they cannot see -- the invisible danger that lurks on doorknobs, seat cushions, tables and desks...any public space -- the number of children walking this path of fear grows daily.

I am reminded of early last summer, when Susan was struggling to tolerate her (very small) home dose of peanut protein.

I remember clearly being told that it was "impossible" that her gastrointestinal symptoms -- in addition to the intense fatigue, red and angry skin, moodiness and crusty yucky eyes...were related to her peanut dose.


Now, with a year of the PRROTECT study completed, we are told it is "commonly accepted" that these types ofsymptoms (can) accompany oral immunotherapy.
Susan is still an outlier.
As a dear friend would say, she is still a zebra in a medical setting where it is much better to be a plain old horse.

So, while we have been told that a minute variance in how much peanut protein is in Susan's daily dose should not matter, experience suggests otherwise.

We are posed to do something incredible tomorrow.

Just 72 hours after experiencing anaphylaxis to her 2000 mg dose (8 1/2 Peanut M & M's), Susan is going to take that same dose -- and hope (expect?) to tolerate it.  

I have a beautiful half...

But in reality, nothing has changed, and yet we are expecting (hoping for) a different result.