Photo by Rebecca Gould Photography

Thursday, May 22, 2014

More Questions than Answers

I've been thinking about what to write in this post all afternoon and evening...and, I'm really not sure where to start...and I think, in order to really fairly represent what happened today, I have to start in the middle -- or maybe even closer to the end...

But first...

I am rational.
I can examine an issue from many angles, and yet, I do not feel that I can SEE this clearly.

One of my strengths is that I am calm, level-headed and critically minded when things are not going well.
And yet -- I feel out of control.

I'd like to think I can find a positive in almost anything -- at least most of the time.
And yet, I'm just not sure what the positive is in all of this...

It starts with vomit.
   I DON'T do vomit.
   About the only good thing I can say about this vomit is that it did not happen in my brand new car.
   Thankfully.  Ever so thankfully.

The vomit happened...
   AFTER the two-hour observation window had passed.
   AFTER we had been cleared to leave the Clinical Research Unit.
   AFTER we had driven to M. Henry (on the North side of Chicago) for lunch.
   AFTER we had walked into the restaurant...
   (and fortunately) 
   AFTER Susan quickly did an about-face in M. Henry's vestibule, pushing me back out into the street.

   Standing on the sidewalk, as I was trying to figure out what was going on, she vomited.

   A lot.  
   And the vomit splattered everywhere.  Yuck.  Yuck.  Did I say YUCK?
  (And no, I don't have a photograph of it, although I did briefly consider capturing the "evidence" photographically, because I was already wondering how much of the 30 mg of peanut protein was now splattered on the sidewalk...)

The minute she was done vomiting, after checking to be sure there was no vomit in her hair (while I DON'T DO vomit, I did manage to stay engaged enough that I grabbed her hair back and held it out of the way -- all the while, trying not to watch, not wanting to join her) -- Susan said, Dr. R. ALWAYS misses it!  (Definition of it:  the excitement, the anaphylaxis).  Dr. R. was on-call the night of Susan's first food challenge -- One Day, Two Food Challenges and left the Clinical Research Unit yesterday just before Susan's reaction began to really increase).  That Susan found humor in the situation was encouraging.

While Susan saw humor in the situation, my mind was RACING.
Nothing about this was right.
This was NOT supposed to be happening.
Did this mean she had failed to tolerate the 30 mg dose of peanut protein?
WHAT did this mean?

The first step was pretty clear -- I needed to talk to the doctor, but, beyond that, all I could think was, "this cannot be good."  Trying not to let Susan see that I was upset, we returned to the car.  There was a lot of street noise, and I knew I did not want to miss a word of the conversation I was about to have.  I was holding Susan's hand while simultaneously holding an Epi-Pen in the other hand and digging in my purse for the contact card we had been given by the clinical trial coordinators.  

As we walked to the car, I questioned Susan vigorously...
How does your throat feel?
Is there anything else going on?
How does your stomach feel?
I checked for hives and looked carefully at her face.

She didn't LOOK any different, but, her body had pretty clearly thrown down a gauntlet, and I was truly afraid.  Susan looked me in the eye and calmly assured me that everything else was "fine."  And, in fact, she wondered aloud if we could still eat at M. Henry.

First things first, my strong girl.

I paged Dr. R., the on-call doctor, who called me back right away.  (I LOVE that about her -- unfortunate that I already knew it to be true, but, I was feeling thankful that I knew she would call me back immediately.  I appreciate not feeling alone in this journey because of the tremendous support the staff at the Clinical Research Unit provide.)

I'm not sure who was the most disheartened by this turn of events -- me, or Susan or...Dr. R.  

Dr. R. formulated a plan with me quickly -- 25 milligrams of Benadryl.  We talked about going right for 37.5 milligrams, but, we were hoping to manage the reaction with the lowest possible pharmaceutical intervention.  

We talked about what to do about the home dosing plan of 30 mg of peanut, and Dr. R. told me that she felt it was important to talk about it with the team.  (I love that about the doctors -- while we usually only see one -- or sometimes two -- of them during a visit, I always feel as though they are each fully informed about what is going on, and I am confident that they make decisions collaboratively.)

After clearing Susan to:
A) Have that coveted lunch at M. Henry
and B) Go to soccer practice if she felt like it...

And while cringing at the thought that anyone who had witnessed the vomit episode might then be watching us as we returned to the restaurant, we headed back to M. Henry.  Knowing my parenting skills might be strongly criticized if someone had witnessed the vomit episode and then saw us return to the restaurant a mere 10 minutes later, I felt a little funny, but, I was NOT going to deny Susan the meal she wanted.  

Here's Susan -- red, slightly swollen cheeks and looking a bit pale, with her Latina Omeleta:

(She didn't eat it all, but, I do believe she enjoyed what she DID eat of it.)

Just after we finished lunch, one of the clinical trial coordinators called back.  She explained that they doctors had talked, and that they felt Susan's home dose should be 15 mg.  She was very clear when she said that they felt Susan could safely home dose at 15 mg on Friday, but, she also offered us the opportunity to return to the Clinical Research Unit.  I was torn -- thought we probably COULD do it at home, but, that was a scary thought...and I wondered about the cumulative effect of all the peanut protein Susan had consumed over the last two days...was that in our favor...or NOT?

While I was torn, I also knew it was not entirely my decision to make.  I asked for a chance to pow-wow on my end and got my husband on the phone.  It wasn't a lengthy discussion at all.  Both Susan and my husband were clear -- they wanted to return to the CRU on Friday for the 15 mg dosing and observation.  Once I knew that they both felt there was not much to discuss, it was easy.  I called the clinical trial coordinator back, and set an appointment for 9:00 am the following day.  (Blog about Friday, The Extra Visit, to follow.)

The plan was a bit different:
Pre-medicate with 10 mg of Famotidine.
Drink a minimum of 4 ounces of cold water with the dose.
Eat shortly after the dose (I packed assorted healthy, certified peanut-free snacks)
Longer (minimum of 3 hours) observation period.

All good.
All really, really good.
I felt relieved.

I'm not sure how I would have felt had the plan been to dose at home, but, I know that this plan felt just about perfect.

While we had talked about a book shopping spree at Half Price Books in preparation for Susan's upcoming read-a-thon, she was pretty wiped out -- she was tired when she got up -- no doubt from yesterday's reactions...and then today's reaction and Benadryl surely made it worse.  So, we headed home and Susan spent the rest of the afternoon sleeping and then, eventually, reading in her bed.  (She was THRILLED to find a card and a gift from her new littlest friend, Amelia...a friendship that I am hoping will serve them both well!)

Susan was asleep for the night by about 7:30 pm, and when I didn't have to bug her to put her book down, I knew she was really, really tired.  

Prior to what we are now (fondly) calling The Vomit Episode, I had already pretty much decided I was not prepared to leave Susan alone.  (And by this, I mean -- not AT ALL alone -- not even in her room while I was elsewhere in the house.  I am sure that sounds over-the-top to some, but, I cannot eliminate the fear that is now forefront in my mind...that Susan might have a reaction and not be able to get the help she needs.)  In some ways, I am thankful for The Vomit Episode, because once it occurred outside the two-hour observation window, I just knew that I could not allow her to be alone at all, ever.  (Will I revisit this at some point -- probably, hopefully - but, for now, that's where we are.)

Susan, who values her "alone" time -- who needs it like some people need coffee or chocolate -- easily agreed to the idea that SOMEONE would be with her at all times.  That told me something important, too.  After I thought about it for a while, and saw how concerned her younger twin siblings were (aged 9 1/2, bright, kind and caring -- at least most of the time), I realized that a good way to include them in this difficult process is to share the responsibility of being with Susan with them.  

So, Thursday afternoon and evening went something like this:

My husband took a turn while I drove home from soccer...
And then Meg and Carl hung out in Susan's room (theoretically, at least, doing their homework) while I made dinner.
Not only does this plan tremendously reduce the burden on me, it also includes Susan's siblings in a way that I think could be hugely important to them.  

As I was tucking Susan in, we revisited the idea that the clinical trial has "gotten scary."  I reminded her that she does not have to complete it.  We are free to withdraw at any time.  I do not want that, but, I'm not Susan, and, while I, as her parent, might have final say on this, it is HER BODY, and I will not make her continue if she does not want to.

My calm, quiet, brave girl assured me that she wants to see this through.  She said, "Mom, I don't think I have been getting the Xolair."  After a pause, she added, "and I know how important it is to have controls, so I HAVE to finish this.  And then, "Mom, I will get the Xolair."  (I love that she still believes.)

Heart in my throat, I was not quite sure how to respond, for a question that has occurred to me -- that apparently has not yet made its way into her head was "WHAT IF she is receiving the Xolair and it either is not working for her or does not work for kids like her?"

Do I really believe that?
No, of course not -- but, in my heart of hearts, if I listen to that little voice, that's what IT has to say.
I hope -- more than I ever have...I think -- that my little voice is wrong right now.  So wrong.  (As a social worker who spends a lot of time in rough areas, I am used to listening to that little voice, but, for now, I have asked it to be quiet...)

Circling back to Wednesday:

While the doctor and clinical trial coordinator had initially told me (on Wednesday, after Susan's reaction was under control) that they thought Susan's home dose would be started at either 45 mg or 60 mg, after consulting with the principal investigator, they decided it would be safest to start with a home dose of 30 mg.  I did not specifically ask, but, I think we all thought that she would be relatively easily able to tolerate this dose.  (At least, that's what I hoped, as it was lower than what they had originally been thinking about...)

As Susan needs to be able to tolerate 250 mg of peanut protein by Week 19 (we are in Week 12) in order to stay on track in the study, I was concerned.

When I looked at the dosing chart, and counted down, I knew a starting point of 30 mg would make it hard for Susan to reach tolerance of 250 mg by Week 19.  I wondered if it would be better to try for 45 mg for her first home dose, but, I did not say anything, as I did not want something I merely wondered to affect any decision-making (in all honesty, I don't think it would have, but, I was feeling really cautious).  

The doctors assured me that if Susan was tolerating the home dosing well, we could have twice-weekly up-dosing visits in an effort to reach tolerance of 250 mg by Week 19.  that sounded like a plausible plan, and, we even noted some opportunities for twice-weekly visits as we scheduled the next month of appointments.

Here's a picture of the rapid desensitization dosing chart:

 -- And, despite the doctor's assurances that it could still be possible for Susan to get to 250 mg by Week 19, I wasn't sure.  

And now, back to the beginning of Thursday:

As we drove into the city on Thursday, I was filled with misgivings and uncertainty.  CLEARLY, Susan had not tolerated anywhere near the amount of peanut protein expected.  What did that mean?  And, even though the 30 mg dose proposed sounded like something she should be able to tolerate, I couldn't help but remember that she had had signs of a reaction well before the 30 mg dose during the challenge.  

Susan and I did not talk much on the way to Lurie on Thursday.  She was reading.  But, I also noticed that she had Ga and her baby blankie.  That told me ALL I needed to know.

We started with the usual -- height, weight, vitals...and Susan was hooked up to machines to monitor her blood pressure and pulse ox.

The clinical trial coordinator pulled out a prescription bottle, clearly labeled with Susan's name and the dose -- 30 mg of peanut protein.  I eyed it warily.  

A poisonous cure.
What parent wants to face that kind of choice?

Susan picked applesauce over chocolate pudding as the product into which the peanut protein would be mixed (incidentally, she says she is NEVER doing that again...she did not care for it AT ALL!)...and, as usual, spooned it nonchalantly into her mouth.  Honestly, I marvel at her every time she does that...

Calm...and so much more.

And then, while I watched...

Her blood pressure went up.

She had some skin changes.  (I did not photograph them until we were nearly at the end of the two-hour observation period -- looking back, I SO wish I had captured her skin at its worst...but I didn't.  I won't make that mistake again!)

As I sat there, with the two-hour observation period ticking by, I thought about my friend who exalted at the idea that Susan had been able to eat peanut -- ANY peanut...and turned that idea over in my mind.  I wasn't feeling the same sense of excitement about where Susan was that my friend had expressed, but, I tried to hold onto that idea -- to be positive.

We spent our observation period watching videos of Susan's skating (I dug around until I found the YouTube video of Susan's first ice show solo two years ago and I think we all marveled at her growth and development as a skater when we watched that, then last year's solo and then the solo she skated a few weeks ago).  I believe that the doctors and clinical trial coordinators genuinely care about Susan as a person -- and I am thankful for that every time we are there.

We also spent time talking about food.  While I wish it weren't so, Susan is (or has the potential to be, at least, should she become freed of her peanut restraints) a foodie. She truly enjoys trying new things, and looks forward to eating out.  I can count on her to read the menu carefully, and to make interesting observations about the various dishes being offered.  So, while a late lunch at Zapatista had originally been a plan, I had an idea while we were sitting there.  Susan and I once ate at M. Henry, on the north side of Chicago.  I was very impressed by their response to her food allergy needs AND to the waitstaff's knowledge about the menu (I am gluten free).  Wanting to do something special for her, I suggested M. Henry.  I happened to have pictures of our meal there from our first visit, and I pulled them up to show the doctor and clinical trial coordinators.  Susan was totally psyched about eating at M. Henry, so, once we were cleared, off we went.  It was about 12:30 pm...

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