The Peanut Plan

Friday morning was dreary.

Despite my wanting to feel optimistic -- for I knew we would have a real plan at some point in the day...I felt that the weather matched my mood.

I had spent the better part of the night wondering about what would happen next in the clinical trial.

I knew that -- despite how hard it had gotten -- Susan was committed to seeing the trial through.

And while I admired that in her, I felt the need to think it all through very carefully.

I knew there was the possibility that Susan would be moved to the Open Label Xolair injection arm of the clinical trial.  If that was the case, the decision was easy.  The worst was (hopefully) over.

But, what if the Site Coordinator did not approve that? 

Susan was anxious.

She wanted to know whether or not she would be taking the 60 mg peanut dose...

She asked repeatedly.

And each time, I told her that I was waiting to hear from the clinical trial coordinator.

I hated that I did not have an answer for her...

And as I had never been anxious like this before...about anything...I was not sure how to support her.

The inner turmoil that she must live with every day is greater than I can begin to imagine, I suspect.

For years, we have avoided peanuts.

We have taught her to decline to eat foods that even might be cross-contaminated with peanut.

We have filled our van with peanut-free snacks, cereals and candies in Canada and have been regular customers of Peanut Free Planet.

And now we are asking her to eat peanut.

We are pushing her body to tolerate a level of peanut that makes her feel really, really unwell.

Susan wants this, and yet, she is afraid of it at the same time.

I think that must be the definition of brave -- going on in the face of something incredibly, mind-boggling frightening.  Eating a food she knows could kill her on a quest for a treatment (maybe, even, someday -- a cure?) -- not just for herself, but, for others.

That's bravery.

And if there is some anxiety mixed in there -- well, as much as I wish it were not so, as much as I wish Susan did not have to endure that anxiety, I also think it is...perfectly normal.

As the day wore on, Susan's anxiety, I found, increased my own anxiety.

I was hanging out at the rink, trying to proof read a blog post, but I could not concentrate. 

I was thankful that Susan was occupied (distracted, I hoped) by skating with a group of good friends.

I chatted with a friend.

I filled her in on how Susan's week had been...

She has first-hand experience with cancer and chemotherapy and observed that, for Susan, the peanut is like chemotherapy.  It seems the very key to her wellness will first make her sick.

I have turned that observation over and over in my mind.

I (thankfully) do not have first-hand experience with cancer, but I suspect chemotherapy is worse.

But -- this might very well be a close second.

And then -- it happened again.

That very unusual burp followed by violent dry heaves.

While I don't do vomit, I have found myself doing A LOT of vomit over the last few weeks.

I am getting better at it.

And I have decided that there is a difference between regular vomiting and vomiting when the body is responding to an allergen.  This could be true of other vomiting, as well (I am by no means an expert) -- there is more force -- as though the body is desperately, aggressively, anxiously trying to rid itself of something.

I paged the clinical trial coordinator.

She called me back right away...and apologetically explained that they had been gathering information, waiting for answers.

I rushed to explain that even though Susan had not taken her peanut dose the previous day -- even though we were approaching FORTY-EIGHT hours since Susan's last peanut dose...she had vomited...again.

She was silent.

I was, too.

This was so very, very difficult.

She apologized.

I felt badly that she felt badly.

We signed up for this -- we wanted so very, very badly to be in this clinical trial.

Even in the bleakest of moments, Susan was able to say that she still wanted to do this.

Even in the bleakest of moments, I was able to say very clearly -- to myself, to others -- that this was a journey we were committed to.

We know this is not a cure.

This is a treatment -- a step toward greater safety, freedom.

The clinical trial coordinator apologetically explained to me that they would need Susan to at least attempt a dose today.

I understood -- going too long between doses is not good at all, and can, in fact, lead to increased severity of allergy (and we certainly do not need that).

The Clinical Trial Coordinator called back quickly.

They had a plan.

With little to no fanfare, she announced that the Site Coordinator had approved moving Susan to the Open Label Xolair arm of the trial.  Incredible.

Really?

Before I could possibly process this, she went on to say that they wanted to decrease Susan's peanut dose to 45 mg a day.

The anxiety lifted.

While Susan had had some trouble with the 45 mg peanut dose (that's what she vomited the day of the skating competition), other than that one episode, it had been fairly tolerable.

I met Susan with the incredible news when she came off the ice.

The only drawback was that we would need to drive downtown on a Friday afternoon to pick up the proper concentration of the peanut protein for Susan's new dose.  It was worth it.

The day improved even more when a good friend -- who just happened to be leaving Lurie as we were getting in the car to drive there -- offered to pick up Susan's prescription peanut protein. 

And just like that, we had our afternoon back!

We used it to create the best care packages I have ever sent to overnight camp. 

Each box has approximately 75 - 80 balloons.  Each balloon holds at least one puzzle piece.  When all the balloons are popped, there will be 100 puzzle pieces.  We sent one to Meg's cabin and one to Carl's cabin.  Too bad we "forgot" the boxes.  I guess they'll have to use good teamwork!

Oh -- and the 45 mg dose?

Easy.
And exactly what we needed.

A Little Bit of Advocacy (E-Mail I Sent to Clinical Trial Coordinator Friday Morning)

Dear (Clinical Trial Coordinator),

Because it sounded like maybe I had not been clear about what Susan's symptoms were like on Wednesday, I thought it might be good if I provided a recap.

Last Thursday (June 12th), Susan became nauseous while in gym class (as it was the second to last day of school, and it was a short class period, they were not doing anything physical). She went to the nurse, who called me.  The feeling came on quickly and resolved without Susan ever vomiting.  As you know, I called and spoke with you and then spoke with Dr. Pongracic.  

Susan ate her lunch after feeling nauseous without issue (around 10:50 am -- shortened schedule = early lunch).  When Susan took her 45 mg peanut dose (in a smoothie) around 1:10 that day, she struggled.  She was drinking it more slowly than usual.  She told me she was fine, but, I could tell that it was hard for her.  She had a very unusual burp and then, before finishing her smoothie, vomited violently.

On Dr. Pongracic's advice, we withheld her 45 mg peanut dose on Friday, June 13th.

As you know, she updosed without issue on Tuesday, June 17th, to 60 mg of peanut protein. She took that dose shortly after 11:00 am.

On Wednesday, June 18th, at about 11:15 am, she had a period of feeling nauseous accompanied by what were essentially dry heaves. She vomited a small amount of bile, but, nothing else.  I believe this is because she probably did not have anything in her stomach, as she ate breakfast at about 7:15 am.

As you know, we came to the CRU for her 60 mg dose on Wednesday.  We both appreciated that this was offered to us, and I know Susan was glad to be there for that dose.  Of course, the 60 mg dose Susan took at the CRU was uneventful.  On the way home, she had one of those strange burps again (this is the only time she has had such a burp and then NOT vomited).

On Thursday, at about 10:00 am, Susan had a similar episode.  She felt nauseous, accompanied by what were essentially dry heaves.  She vomited a small amount of bile, but, nothing else.  She ate breakfast at about 6:30 am, so, it was likely that she did not have anything in her stomach.  She was crying and saying that she was "scared" about taking the 60 mg dose later in the day, because she was worried about what would happen.

We were with a friend who has medically fragile triplets.  They all have digestive issues and my friend suggested Susan might feel better if she tried to keep something in her stomach. Susan ate a granola bar and drank orange juice after this episode and felt better.

She ate lunch at about 11:30 am and felt well enough to take an on-ice and then an off-ice skating class.  While she was in those classes, I talked with you.

She snacked on dried apricots around 1:15 (and though I encouraged her to eat something a bit more substantial, she declined).  She had the same very unusual burp she as had several times now before vomiting and at about 1:50 pm, she vomited (mostly only dried apricot bits and bile) until she had dry heaves.  As you know, I called you again after this episode.

Susan immediately felt better, and snacked on Saltines, pretzels and Sprite.  She ate dinner without issue.

As per your recommendation, we withheld her 60 mg dose yesterday.  

While there are few symptoms to report other than the vomiting and tremendous fatigue, I would add that Susan has been grouchy and touchy in a way that is unusual for her the last few days.  It is my strong impression that she is using all of her resources to hold herself together physically.  I think she feels unwell in a way she cannot articulate, and that evidence of that is clear in her mood and demeanor.

I know you are working on a plan, and we are looking forwarding to hearing what you would like us to do.  If her dose is going to change, I think I will probably have to come to Lurie to pick up peanut in the proper concentration.  (If I am going to need to do this, I would like to try to avoid Friday rush hour, if possible.)

Thank you.

Caryn

Losing the "Peanut Fight"

I could try to put a happy face on...

I could list all of the possible great outcomes of the clinical trial -- for Susan, for others living with food allergies, for the medical community...

But, that wouldn't be very honest of me.

Right now, while I COULD do all of those things, I don't really want to.

Today (and honestly, a number of days leading up to today) has been ever so hard.

After Susan tolerated the (dreaded) 60 mg dose on Tuesday and then on Wednesday (despite her nausea), I think we both felt she was "in the clear."  (Whatever THAT means.)  The head-game the 60 mg dose could have become was behind us.  I found myself thinking that the nausea last week and yesterday were...(maybe, hopefully?) flukes.

But, honestly, deep down -- while I wanted to think that, I didn't really, truly believe it. 

(Sneaky, sneaky peanut.)

While we have always known Susan's peanut allergy is atypically severe, we occasionally fall into the trap of...getting almost comfortable with the way things are.  (I say almost, for I was still sleeping with her and never, not ever leaving her alone...and how "normal" is that with a mature, otherwise typical preteen?)

I was hanging out at the rink while Susan skated on Thursday morning.  I was trying to find a balance between sitting IN the rink and actually watching her and giving her just enough space that she would not feel like I was watching her every move.  I finally talked with Susan about my dilemma and asked her what she wanted me to do.

She was clear:

-- Don't leave.

-- But don't hover.

-- "Oh...and you don't need to sit and watch me, either." 

    (In the skating community, parents are encouraged, to get out of the way -- skaters who are serious about their sport will make good use of their practice time without a parent hovering over their every move.)

We agreed that I would sit "somewhere" in the lobby.

Susan allowed that I could sit wherever I wanted.

I found a corner near an outlet, plugged my computer in and worked on a blog entry.

A friend came with her darling daughter (Susan's tiniest admirer, Amelia) and we chatted.

We were watching Amelia on a different ice surface when Susan tapped me on the shoulder.

I turned -- struck both by her height next to me and by her tearstained face.

She didn't have to tell me...for I knew.

She had vomited (again).

I hugged her.

I didn't know what else to do.

My friend bought her a drink from the vending machine.

We sat down.

We talked about what had happened.

Susan was feeling better, so, she snacked on a cereal bar and drank some juice.

This -- as much as anything -- confirmed for me that the vomiting is not some errant, ever-hanging-on stomach bug...but somehow, peanut related.

I did not know what to do.

Actually, I *KNEW* what to do, but, I did not know what would happen next -- after I made the call I knew I had to make to the clinical trial coordinator.  I could not imagine what she would say, what the remedy would be...

Feeling better, Susan got back on the ice.

More confirmation.

I paged the clinical trial coordinator.

She called me back right away.

(Really, even though I was impatient yesterday, she does reliably call me back right away.)

I detected a wary concern in her voice (not in a bad way -- I felt what I heard in her voice echoed exactly how I was feeling -- which in an odd way made me feel both better and worse at the same time).

She listened carefully.

Asked questions.

I pictured her taking notes.

And then, she formulated a "for now" plan.

HOLD the peanut dose.

Until?

Well...until I call you...until we know more of what we are doing.

Susan was relieved when I told her we were going to "hold" the dose.  I don't think she ever articulated it well, but, I think the 60 mg peanut dose made her feel unwell in a pervasive, whole-body kind of way that was far outside the margins of the symptoms the clinical trial coordinator and doctors assessed for.

So then, we waited.

And Susan skated.

And took an off-ice class.

And snacked on the theory that her stomach might be more cooperative if it had something in it at all times.

And then we picked up Susan's littlest friend, Amelia, and drove her home from her skating/gymnastics camp and...just as we were pulling into Amelia's driveway, Susan had a very odd burp.  The same kind of burp that had preceded every other vomit episode.

I heard it, and I saw the look on her face...

(as did Amelia's mother)

And the moment passed.

The girls sat down to hang out -- to relax and watch a movie together.

Quiet, restful time...

Until Susan burped again...and then vomited.

Violently, repeatedly -- until all that was left were dry heaves -- again, and again and again.

When she was done -- shaky, white, and sweaty, she said, "it is like something is trying to get out of me."

Yes.

Peanut.

I paged the clinical trial coordinator again.

She called me back right away.

In an apologetic rush, she explained that she had not called me back because she was waiting for a final plan.  She explained that they had requested permission from the Site Director to move Susan to the Open Label Xolair arm of the study...

I felt immense relief as I interrupted her to explain that while that all sounded incredible, I was actually calling because Susan had vomited -- again.

She was quiet.

I was quiet while I listened to her think.

She gathered her thoughts and said with authority that Susan should not take her 60 mg dose that day.

I felt relief.

A (temporary) reprieve from this fight with peanut.

The sympathy she felt for Susan was evident, and I was thankful once again to be traveling this journey with such a compassionate group of people (medical professionals) who really do see Susan as a person.

We agreed that we would talk in the morning.

Susan and I agreed that she would not skate again that day.

Susan snacked on crackers.  We talked about a baked potato for dinner.

More confirmation.

I set about cancelling Susan's spin lesson with her new instructor.

I prepared to send a text message to her moves instructor.

We gathered ourselves and left Amelia's.

In the car, in a tiny voice, Susan asked, "What if I do want to skate this afternoon?"

As I was pretty certain that with less than an hour's notice I had paid for at least one of the lessons regardless of whether or not she took it (if not both), I told her that as far as I was concerned, we could go to the rink and she could decide at any point whether or not she wanted to take her lessons -- before or during.

We stopped for a Sprite.

It had nearly the power of a Slurpee.  (OK, we're partial to Freeze's, but, we call them Slurpees...)

While Susan was putting on her skates, I snuck into the Pro Shop.

I had an idea -- she needed a new pair of gloves, and I was pretty sure I had the perfect pair in mind...

TRYING to Eat Peanut

Tuesday night passed uneventfully into Wednesday morning.

As the 24-hour post-dose mark approached, I began to feel more comfortable. 

Surely, if Susan was going to have a reaction, she would have by that point.

At her request, and knowing that her skating coach and a number of other people who know her well would be around, we left her alone at the rink for a series of on- and off-ice summer skating classes.

A friend issued an impromptu lunch invitation.

I accepted.

I was looking forward to a break from my non-stop time with Susan as much (I am sure) as she was looking forward to a break from me.  While I adore her, and I treasure my time with her, she is a child who needs her space...and as a parent, I know I benefit from company of adults in addition to the company of my children.

I squeezed a few quick errands in, a storm hit and before I knew it, I was running late for lunch.  I texted my understanding friend and she assured me I should not worry.

I appreciated her understanding and patience.

I was SO looking forward to lunch with an adult friend.

And then, a mere minute or two after I walked into the restaurant, my phone rang.

It was Susan, calling me.

Susan doesn't call me -- not out of the blue, and most certainly not when she is supposed to be in a skating class...

My heart stopped.

Literally.  I am sure of it.

I showed my friend that it was Susan calling and quickly answered.

She was crying, and I had a hard time understanding what she was saying at first.

I felt a mixture of alarm and relief wash through me -- if she was calling me, talking to me herself, she must be okay...but, she was crying, and I was having trouble understanding why.

I heard her say something about vomit, and as I hastily gathered my things, I said something (I no longer remember what) to my friend and hurried out of the restaurant.  In good traffic, I could be at the rink in 15 minutes, but, it was storming...and there were some areas that had lost power... and I needed gas...and I knew that no matter how quickly I got there, it was going to feel like it took way, way too long.)

And even though I did not really understand what had happened,

I DID know that I was regretting having left Susan at the rink -- alone.

(Okay.  She had not really been alone, but I was feeling like she had been alone, for I had not been there.)

I was in the car, driving (OK, I'll admit it, I was speeding) toward the rink (while using the nifty hands-free function in my new car) before I fully understood what had happened:

At about 11:15, Susan had a sudden wave of nausea.

Because she had not eaten anything since breakfast (very early -- that is the definition of a competitive skater's life), her stomach was empty, so, she had what were essentially dry heaves.  

The feeling passed as quickly as it came on, but, it scared Susan -- for it was like Thursday, but...worse.

I so got it.

I was scared, too.

That near-miss mix of adrenaline and relief flooded my body.

She was OK.

For now.

But what next?

We had planned for her to take her peanut dose at 12:30 pm.  How would she ever be able to do that?  Could she even take her 60 mg dose of peanut protein?  WOULD she tolerate it?  Or was this some unrelated, random nausea?  I *SO* doubted that, but, I tried to entertain every possibility.

Knowing there were no easy answers, I paged the clinical trial coordinator and when she did not call me back in about two minutes (yes, I knew -- even at the time -- that I was not being patient enough, but, I was SCARED, and I wanted to talk to someone right away), I called the Clinical Research Unit (CRU) directly and was relieved to learn that the clinical trial coordinator was there.  They transferred her to me right away.

As I hurtled down the highway, I *think* I apologized for tracking her down like a mad woman (I hope!) and launched into an explanation of what had happened.  She placed my call on the speaker phone, as Dr. R. was in the office with her, and she thought we should all talk about what had happened so that we could "make a plan."

I liked the idea of making a plan, but, I could not imagine what that plan might be.  I was feeling slightly unhinged, but, trying to stay calm. 

[IF Susan's peanut dose from the previous day had caused this nausea (and even though I *SO* did not want to believe it had, in my heart of hearts, I believed it was)...this changed everything.  This was a reaction nearly 24-hours post dose.  I could hardly wrap my head around the implications.  And, even now, I am not sure I have...]

And then...while I was wondering what type of "plan" could possibly help, Dr. R. proposed that we go into the CRU for Susan's 60 mg dose of peanut protein.  Relief washed over me.  Can I say that again?  Relief WASHED OVER ME.  It was such a GOOD idea.  I liked that plan.  And I was pretty sure Susan would like it, too.

While the clinical trial has clearly become difficult in a way I do not think we could possibly have anticipated, I continue to marvel at the tremendous support the doctors and clinical trial coordinators provide. 

With the plan in place (pending, of course, Susan's buy-in), there were a few logistical issues to resolve:

-- I did not have Susan's peanut protein with me

-- I did not have our bullet blender or chocolate whey powder with me

(-- I did not have anything special we could use to pass our time in the CRU)

Dr. R. and the clinical trial coordinator assured me that their pharmacy could provide Susan's 60 mg peanut dose (I would just need to figure out an acceptable "vehicle" for delivery). 

As I was finalizing the details of our plan with Dr. R. and the clinical trial coordinator, I arrived at the rink (NONE too soon).  Susan was waiting for me.  As I outlined the plan, I saw relief on her face. 

Seeing the relief on her face made me feel better.

Eleven-nearly-twelve is such a difficult time.

The challenges of this clinical trial have, I am sure, exacerbated it.

Control is SO important.

Finding oneself is CRUCIAL.  Critical.

Balance (for me, as Susan's parent) is imperative.

It takes all of everything that I have to find something (balance?) that I hope is working for her.

[But really, will I EVER know for sure?  I try to give Susan the opportunity to make decisions (read:  power) whenever possible.  But, is it enough?  There is no manual for this, that is for sure...]

En route to Lurie Children's Hospital, Susan and I brainstormed acceptable options for her peanut dose.  She was deeply disappointed that I did not have the bullet blender and chocolate whey powder (we use Tera's Whey) with me...and I vowed that, in this time of uncertainty, I would always carry it with me from now on...

After much discussion, we settled on mixing the dose into a chocolate milkshake from McDonald's.  While I was certain that I had seen a McDonald's or two between the highway and the hospital, as irregular (at best) customers of McDonald's, I could not picture exactly where one was.  I had Susan send a text message to the friend I had stood up at lunch (if you arrive and then fly out the door, have you really stood your friend up?) -- who has spent far more than her fair share of time at Lurie Children's Hospital.  She quickly replied with multiple options, including some ideas for me (I had missed breakfast and had been counting on our lunch together!).

Susan and I drove through that funky old-fashioned McDonald's on Ohio in downtown Chicago and purchased a chocolate milkshake.  Susan was in a mood.  I wasn't sure what of the many possible options to attribute it to:  not feeling well, being tired, the stress and uncertainty of it all, being nearly 12?  Who knew?  Most certainly not me.

While we waited in the drive-through line, I texted my friend the pedicurist with an update.  I was not at all certain we would make a 5:00 pm pedicure.  I did not know whether or not I should cancel.  My friend kindly assured me Susan was her last appointment of the day...and said she wanted me to keep her updated as the afternoon wore on.  Friends like these ROCK.  (Thank you, Andi!)

Susan requested (and received) permission from me to drink some of the milkshake (I knew we would need space for the peanut powder protein)...and oddly, by the time we had arrived at the CRU, the milkshake was deflated...flat...and...unlike any milkshake I had ever seen.  (Sorry, McDonald's.)

As it was not a "real" clinic visit, the protocol was different than usual.  The clinical trial coordinator weighed and measured Susan and also had her do the two breathing tests she regularly does before each updose.  It was business as usual, even though we had been there as recently as the previous day...

Strongly doubting whether or not it was made of real food, I mixed Susan's 60 mg dose of peanut protein into her deflated chocolate milkshake.  Knowing she had to drink every last sip of it, I spared her the disparaging commentary I might otherwise have made...(nothing against McDonald's here, I promise...I was just disappointed in what happened to the milkshake over time.  Simple fix:  Don't try this at home.  If you buy a McDonald's milkshake, enjoy it promptly.)

Composed as ever, despite the events earlier in the day, Susan drank her deflated, peanut-laden (contaminated?  filled?) milkshake down -- calmly.

While I have become inured to the blood pressure cuff and pulse ox monitor, this picture of Susan is a good reminder of the seriousness of the journey she (we) has (have) embarked upon.

Once again, I allowed Susan to lose herself in a world of her own making -- this time Minecraft.  While I do not believe in unlimited gaming or movie watching, I DO believe that it is important to allow children undergoing difficult or stressful medical procedures to cope as works best for them.  In Susan's case, finding her own private place to "hang out" seems like the key...

The minutes ticked by...

I noted the emergency bag on a desk just outside our room.  I was pretty sure that bag straddled our room and the room another child in the PRROTECT clinical trial was in...close enough for both of us, I thought...while I hoped fervently that there would be no need for it...

And while we waited for...something, anything to happen, nothing did. 
Incredible.
And sort of scary at the same time...
For if Susan tolerated the 60 mg peanut dose in the clinic, what were we to make of things going forward?

What would it mean?

The minutes dragged by, becoming a half hour, an hour, then two hours.
We were free to go -- but, Susan wasn't quite ready.
WHO could blame her?

Then, after an additional twenty minutes or so, Susan shrugged her shoulders and declared herself ready to leave.  I think she and I were both thinking it was not likely possible to stay long enough to ensure that she would be in the clinic if she had a delayed reaction.  

She was in a mood, and, as we walked out of the CRU, I could hardly blame her.
If anything, the uncertainty was worse.

I texted my friend the pedicurist (OK, she wears other hats, but, on this day, that was her role in Susan's life).  I told her we were on our way, but that I was not certain when we would arrive.  She said she would be there.  Incredible.  As I offered up thanks for her, I remembered to also appreciate the fact that, as the mother of a skater, she would not be horrified by Susan's "skater feet"!

  
After being pampered with new flip flops and a pedicure, Susan's mood improved.  

We picked up baked potatoes from our favorite potato spot -- Michael's Red Hots -- and headed home.  Susan climbed into bed with her potato and a book...and I followed her lead on the trundle bed next to her.  

We didn't talk.
What was there to say?