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Photo by Rebecca Gould Photography

Saturday, May 31, 2014

First Home Dose -- 15 mg (3/50) of Peanut Protein

For those who are new to Susan's journey, here is the backstory:

Susan is in a clinical trial at Lurie Children's Hospital in Chicago.
The clinical trial is called PRROTECT.
There are nine (9) subjects in the double-blind trial.
Two (2) of the subjects are controls.
Seven (7) of the subjects will receive injections of the medication Xolair, which is believed to decrease the body's autoimmune response thereby increasing success rates in oral immunotherapy (OIT).
All subjects in the study will (eventually) receive the Xolair, as any subject who does not make progress toward increasing tolerance of peanut by Week 19 (the standard is tolerance of 250 mg of peanut) will begin receiving open-label injections of Xolair.

For those who do not know Susan, I am certain that it sounds like we are taking many big risks...
And, we are.
But, Susan's allergy is so extreme and has affected her life in so many ways that we feel the opportunity to receive the Xolair in conjunction with OIT is well worth the risk.
While some who participate in OIT have to worry about worsening of the allergy, we feel Susan's allergy is already so bad that this risk is worth taking.

For us, the clinical trial has never been about Susan being able to eat handfuls of peanut and whatever other peanut she wishes all day long...
The clinical trial is about decreasing the daily risks she faces (she has had multiple well-documented airborne and contact anaphylactic reactions over the years) in an effort to increase her overall quality of life.

Some day, she wants to:
Fly -- to places she will get a stamp in her passport, like Greece, Egypt and Spain.
Eat Samples -- at Whole Foods, Mariano's and Caputo's.
Watch a Movie -- first release, big screen, maybe even 3-D...in a movie theater.

Since we started the clinical trial, we have become increasingly aware of the potential impact of this work (and other clinical trials like it), and we have begun to appreciate how Susan's role in this particular clinical trial is part of something much bigger than what it might mean for her alone.  Even though it appears at this point that Susan is either in the control group or the Xolair is not effective for her, Susan intends to see the clinical trial through.  (That said, it is entirely possible she HAS BEEN and IS receiving the Xolair...maybe it HAS been more effective than we think...who knows?) 


Where we are now:
After Friday's "successful" 15 mg dose of peanut in the Clinical Research Unit (CRU), Susan's home dose of peanut protein was set at 15 mg, which is equivalent to 3/50ths of a peanut, or 0.6% of a peanut.  That's not a lot, but, it was enough to scare me.

Before we were discharged from the CRU on Friday, we reviewed the home dosing instructions.  The documents that came with the dosing instructions were sobering, and as I went over the instructions with the clinical trial coordinator, I was thrust suddenly back in time -- to nearly 14 years ago -- after my husband's kidney transplant.  In this instance the brown paper bag was the size of a lunch sack, and contained only one vial of "medication" whereas my husband's fifteen (15) post-transplant medications nearly filled a grocery bag.  Volume aside, the similarities struck me as otherwise quite similar. In both situations, I held medications that could mean the difference between life and death for my loved ones.  Mismanaged, the consequences could be...terrible. Devastating.

Dr. R. called me Friday night -- to check on Susan and to review the instructions and review the plan for the timing of Susan's first home dose. 

I do not think it is possible for me to say often enough how thankful I am for the medical professionals running this particular clinical trial, for they truly see Susan as a person...not just a subject in a study.  

The timing and scheduling of the home doses is WAY more important and complicated than I anticipated it to be.  Not less than 12 hours between the last and the next dose.  No more than twenty-four hours plus four hours (that's 28 hours, but, in clinical-trial speak, they talk about it in terms of 24 + 4) between doses.  No showers for two hours before or after.  No physical activity for two hours after.  Parental observation for two hours after.  

Dr. R. reiterated the importance of giving the first home dose no more than twenty-four hours plus four hours after the last dose.  As Susan's dose on Friday was given in the morning at the CRU, and our ultimate goal is to do her home dosing at night (crucial given that she skates every morning), we had to shift the doses later in the day -- in no greater than four hour increments.  

After some discussion, we settled on a 1:30 pm dose on Saturday, with a dose around the same time on Sunday, and a shift later in the day on Monday -- aiming for about 5:00 pm. Perfect.  Thank goodness for the three-day weekend.

Saturday morning, Susan was up at 5:00 am.  She was on the ice by 6:00 am, and was SO HAPPY to be there -- it makes me glad she has a place -- a community -- that she can call home (away from home).  She has an awesome group of friends who are both older and younger than her and she is as comfortable there as she is in her favorite space at home -- her room.  

After skating, Susan took a shower (the timing of showers has become EXCEPTIONALLY complicated, as she is not to shower two hours before OR after she takes her peanut dose -- which effectively eliminates showering after school or at night...and as she hits the ice at 6:00 am most mornings, a before-skating shower means a VERY EARLY wake-up.  This is just one example of the ways in which the realities of home dosing are so very much more difficult than we ever imagined...

As Susan went about her day, the minutes ticked by.

9:30 am (4 hours to dose)
10:12 am (3+ hours to dose)
10:30 am (3 hours to dose)
I am not going to look at the time again.
And then I found myself wandering into the kitchen, and ever-so-casually, noted that it was 10:46 am.

Oh my.

The minutes ticked by.

As I thought about the reality of the first home dose of peanut protein, I realized Susan would likely do best if she did not have an audience of four (me, my husband and her 2 siblings).  That said, I really liked the idea of NOT being the only one home with her -- what if I needed something and did not want to leave Susan?  

11:30 am
11:42 am

As much as I dreaded the first home dose, I also looked forward to just having it done -- to being able to look at Susan and have us both know that we had been able to handle it -- whatever "it" turned out to be.

So...I created a list of errands and sent my husband and our dramatic younger daughter off to do my bidding.  The list included book titles specifically requested by Susan for her read-a-thon...which turned out to be sufficiently difficult to obtain, and, therefore, consumed a good amount of time.  

12:03 pm
12:18 pm

As 1:30 drew closer, I confirmed that Susan wanted to take her peanut dose in Sunbutter (a sunflower seed based peanut-butter alternative) with apple slices.  She did. 



I wiped off a section of our table and peered into the brown paper bag.

It is hard to believe that I was afraid of the contents, but, I was.

I carefully, and ever-so-slowly laid out the prescription bottle filled with peanut protein, the clinical-trial supplied measuring spoons and the plastic "soufflé cups" they had provided for us to mix Susan's doses in. 



I didn't want to be nervous, but, I was.
Very.

I was acutely aware of the fact that I was about to feed my daughter a substance (a food!) that I had spent years -- and countless hours and dollars -- avoiding.  I was about to feed my daughter a food that brought tremendous controversy to our school district and irrevocably changed the landscape of my friendships.  I was about to feed my daughter something I KNEW could kill her -- in my own home.

Preparing to purposefully feed Susan peanut -- in our home -- the one place I have tried to ensure she ALWAYS feels safe -- was SO, SO much more difficult than it had sounded when I read the parental consent form for the clinical trial.

I squished the Sunbutter into the "soufflé cup" provided by the Clinical Research Unit (CRU)

My hands were shaking -- and bits of that deadly peanut protein fell onto the table where my family eats every day.  I recognized the problem immediately -- I needed something under my work surface to catch that poison so that there was no risk of Susan accidentally encountering it at ANY point in time.  A mistake I would not (will not ever) make again.  



Eventually, I managed to get Susan's dose -- in three 1/4 teaspoon increments of peanut protein suspended in flour -- into the "soufflé cup" supplied by the hospital.





When I was done, that peanut protein sat atop the contents of a pouch of Sunbutter, and I was left to mix it in...slowly, ever -- EVER so slowly so that no deadly (peanut) dust could escape.  



As I mixed, slowly and carefully integrating a food my daughter loves with a substance that has the power to kill her, I marveled at how very far we have come...and I was thankful (once again) that no matter how breathtakingly scary and paralyzingly frightening this is...we have this opportunity.  For as frightening is the opportunity is, it is also -- incredible.

As I struggled to make sense of the idea that the very thing that might cure Susan -- that could open Susan's world in a way we can only dream of -- was also the very thing that could kill her, I vowed to put my doubts aside -- and to embrace this incredible work we (she) are (is) doing.  (That didn't last very long, but, it was a noble concept...)

We have special green plates (and bowls) in our house -- for truly awesome times:  birthdays, tests or papers or school projects well done, soccer goals, awesome goalie saves, record setting skates, speedy runs, eating something that could kill you.  And so, with part of me hating myself while I did it (and the other part of me LOVING that we could celebrate a moment of eating peanut in our home), I served Susan's first home dose of peanut to her on a green plate.  She (of course) didn't bat an eye.  It made total sense to her -- with no visible room for doubt.




Within about 5 minutes, Susan had happily polished off the Sunbutter-peanut combination:



Incredible.  Susan ate it all.  No complaints (although she was also pretty quick to say that she thought she would have it in chocolate pudding tomorrow...)  And while I am realistic enough to know that she has made a choice to see this through, even now -- looking at the empty soufflé cup, I paused.  Susan truly is beyond brave.  Where do these kids come from -- and WHY must they face these challenges?  

We don't really talk about it (and NOT because I haven't put my social worker hat on and tried, let me assure!)...but, just imagine what it must be like to knowingly spoon something into your mouth that could kill you?  Something that has already stolen your breathe and made your body not your own?  HOW MANY of us would do it? HOW MANY of us can even imagine what it is like?  

After Susan was done eating her Sunbutter, peanut and apple snack, she followed it up with four ounces of cold water (how do they arrive at knowing such things?), and I set an alarm on my phone to go off ten minutes later.  The observation period had begun (in more ways than one).


Susan hanging out with Ga, her lovie -- and Sophia, "her" cat -- at the beginning of the observation period.

As Susan is stoic, and rarely complains [although we ARE working with her so that she will (hopefully) be more inclined to tell us what is going on in her body], I set an alarm so that I would be sure to ask her (and yes, to visually inspect her) at regular intervals.

When my alarm went off ten minutes later, after "snoozing" my alarm so that I would have a prompt to check her again 9 minutes later, I looked at Susan carefully. She looked ever so slightly flushed to me.  But, I had to wonder -- did she look flushed because I was examining her with the upmost of care, or was she actually flushed?  I wasn't sure -- that's how subtle the difference was 10 minutes in.

It turned out that I didn't need the "snoozed" reminder -- once I started thinking Susan looked flushed, I could not STOP looking at her.  I didn't want to irritate her, and I KNOW she doesn't like being studied, but, how could I help myself?  I tried to look surreptitiously, but, she knew she was being watched.  And I could tell my intent interest in her was making her...uncomfortable, at the very least.

And so, I apologized...and we both laughed...and I was reminded, again, of her commitment to this clinical trial -- in so many ways -- big and small.



And then, even though I SO did not want to have to check the box on the Daily Peanut Dosing Diary indicating that Susan had had symptoms, not only was she flushed, but, her cheeks -- and then her chest and her back -- were covered in a red, rashy, hivey looking irritation.  


I took pictures.
I wanted photographic proof of both how Susan's skin had looked at the time AND a reference for myself for the rest of the observation period.

The minutes dragged.
I watched for the tiniest sign of a change.

And, I took more photos...her skin grew more irritated looking...but, she otherwise felt fine.  Thankfully.

About the only positive thing I can say about the way her skin was looking is that it did not itch.  Sure looks like it would have...but, thankfully, it didn't!

As we observed, I sent my son (who was really concerned about Susan and therefore readily and truly willing to do whatever we asked) to the kitchen to put together a snack for Susan -- Special K and milk.  I would have let her eat pretty much whatever she wanted as a snack to support her body's digestion of the peanut, as the combination of the peanut dose, water and a snack had worked the previous day -- and yet, I was also thankful that she (reliably, in her own, typical Susan way) picked something that was healthy.  

The minutes ticked by.  I snoozed my alarm several times -- checking Susan carefully at every interval.  Another snack (less healthy -- frozen cookie dough from Market Day) -- ticked by.  And while Susan's skin did not improve, she had no other symptoms.

I wondered about what to do about Susan's skin...and I wondered some more...and I thought about paging the on-call doctor (who just happened to be Dr. R.).  And then, I decided to stop wondering...and to page Dr. R.  Part of me wanted to wait a bit and see what happened, and the other part of me -- so didn't.  I didn't want to try to make sense of these brand-new, foreign symptoms on my own.

Never knowing exactly how an exposure to peanut will affect Susan makes it hard to know how to respond -- especially when the reaction is something new.  Susan had NEVER had her skin look the way it was looking...and without some previous experience to help guide me, I really wasn't sure what to think about the way things were going.

So...setting aside all that internal uncertainty, I paged Dr. R., who, of course, called me back right away.  I immediately provided the same reassurance I always want the school nurse to provide, as my words rushed out in a jumble:  "It's not terrible -- but, I wanted to tell you what is happening with Susan's skin."  I think I heard relief in Dr. R.'s voice...and I was so thankful to have her wisdom on the other end of the phone.  


We talked at length about the way Susan's skin looked -- her "hives," as I was calling them -- for lack of a better word...although as we have VERY limited hive experience and I wasn't entirely certain that that was the right word...

I offered to send pictures, but, Dr. R. trusted my description.
I like this partnership.

And then, we made a plan.  I really appreciate that about the doctor's and clinical trial coordinators -- I always feel like I have a plan, like I know...what to do next -- even in the face of the terrible uncertainty of food allergies -- and even knowing that what to do next might change in the near future, I always feel like -- even if only for the moment -- I have clear direction.

Plan:
-- If Susan's "hives" were still present at the end of the two-hour observation window, I would give Susan 25 mg of Benadryl (Susan could safely have taken more, but, she had a soccer game to play that night, and no one -- except maybe the other team -- likes a sleepy goalie).
-- Begin 20 mg of Famotidine approximately thirty minutes before Susan's home-dose on Sunday (and going forward).  

Sobering -- Daily medications added since introduction of daily peanut dose:
10 mg Zyrtec -- morning
20 mg Famotidine -- 30 minutes before peanut

And then, almost before I knew it, the required two-hour observation window was over. And yet, really, for me, it was also just beginning.  With a history of delayed reactions and the hivey, rashy thing Susan had going on, I realized that I was NOT prepared to leave her alone...

And so begins a new chapter in our lives.

Later, with me, watching ever so carefully from the sideline...Susan and her team played a great game. 
They won!








Monday, May 26, 2014

Susan's Read-a-Thon

For years, Susan has been doing a read-a-thon to raise money for food allergy research. You can read more about it here:  susan-read-a-thon.org.  Susan's determination to find a cure motivated her to start an annual read-a-thon.  That motivation to find a cure is also what will see her through the clinical trial she is in at Lurie Children's Hospital.  



Susan started her day with Everlost, which she finished in 2 hours and 24 minutes.  (We tried to capture the time elapsed in the photo, but, I don't think it showed up very well.)

Susan then moved on to Clockwork Angel, a book she specifically requested for the read-a-thon.  (One of the nurses from the clinical trial recommended it to her, based on something else she was reading -- gotta love that kind of a connection!)



While Susan has set an ambitious goal of reading for 13 hours today, she is also really tired -- I think her immune system is having to work hard to tolerate the peanut protein we keep sending its way.  So...with only a little bit of encouragement from me, Susan took a nap in the middle of her read-a-thon.  

I keep telling Susan that, while her goal is great, this year is different.  She is already doing something incredible.  She is raising awareness about the way food allergies affect children and their families while helping scientists and doctors work toward a cure.  Even if Susan does not achieve her 13 hour goal today, she has already done something awesome.

Moved by Susan's quest for a cure?  You can join her in raising awareness and money for research by signing up to read.  Or, you can make a pledge to at susan-read-a-thon.org.  

Saturday, May 24, 2014

The Back Story

For those who are new to Susan's journey, here is the backstory:

Susan is in a clinical trial at Lurie Children's Hospital in Chicago.
The clinical trial is called PRROTECT.
There are nine (9) subjects in the double-blind trial.
Two (2) of the subjects are controls.
Seven (7) of the subjects will receive injections of the medication Xolair, which is believed to decrease the body's autoimmune response thereby increasing success rates in oral immunotherapy.
All subjects in the study will (eventually) receive the Xolair, as any subject who does not make progress toward increasing tolerance of peanut by Week 19 will begin receiving open-label injections of Xolair.

For those who do not know Susan, I am certain that it sounds like we are taking many big risks.
And, we are.
But, Susan's allergy is so extreme and has affected her life in so many ways that we feel the opportunity to receive the Xolair in conjunction with oral immunotherapy is well worth the risk.
While some who participate in OIT have to worry about worsening of the allergy, we feel Susan's allergy is already so bad that this risk is worth taking.

For us, the clinical trial has never been about Susan being able to eat handfuls of peanut and whatever other peanut she wishes all day long.
The clinical trial is about decreasing the daily risks she faces (she has had multiple well-documented airborne and contact anaphylactic reactions over the years) in an effort to increase her overall quality of life.

Some day, she wants to:
Fly -- to places she will be able to get a stamp in her passport, like Greece, Egypt and Spain.
Try Samples -- at Whole Foods, Mariano's and Caputo's.
Watch a Movie -- in a movie theater.

Since we started the clinical trial, we have become increasingly aware of the potential impact of this work (and other clinical trials like it), and we have begun to appreciate how Susan's role in this particular clinical trial is part of something much bigger than what it might mean for Susan alone.  Even though it appears at this point that Susan is either in the control group or the Xolair is not effective for her, Susan intends to see the clinical trial through.

She's Afraid


She's concerned.
Worried.
Scared.
Afraid.

And I can only imagine what else...

Stressed?
Anxious?

How do I know this?  In all of her years of wearing Epi-Pens in fanny packs and then carrying them in her purse, Susan has NEVER, ever slept with them.  Friday night, for the first time ever, she did.  

I sent this picture to a small group of friends who are supporting Susan (and us) through this experience, with a short text message, explaining the significance.

A dear friend (who is also a social worker) observed that what Susan was doing was "situationally normal."  By sleeping with her Epi-Pens right next to her, she was (at least hopefully) gaining a sense of control and doing something that made her feel (more?) safe.  OF COURSE.

And, while I was deeply saddened to see Susan's Epi-Pens right there next to her -- because it proved beyond anything she has ever actually voiced that this journey is frightening -- I cling to my friend's descriptor:  "resilient.

And I have added a few descriptors of my own:  

Resolute.
Determined.
Brave.
Incredibly, undeniably brave.

Friday, May 23, 2014

The Extra Visit -- 15 mg of Peanut Protein

Sometimes, I turn a decision over and over in my mind, debating at length about what to do or how to respond -- all the while knowing that none of my options are great...while also knowing that regardless of what I do, it is possible I will still have regrets.  

I woke Friday morning feeling exhausted...and disheartened.  While Susan had consistently been clear in her desire to see the clinical trial through...even after the reactions she had on Wednesday and on Thursday, our experience was certainly not what I had envisioned when we presented the opportunity to her.  While we knew there was a possibility that Susan would be one of the two controls in the group of nine (if that's the case, what rotten, crummy luck)...and yet, while we KNEW the possibility existed, once we were facing the very real possibility that she had not been receiving Xolair injections, I was deeply disappointed.  

As I lay in bed Thursday night, awake more than I was asleep, I wondered -- as Susan's mother, where the line between supporting Susan's choice and being her best possible parent was.  

-- Did I (do I?) have a responsibility to step in and make a decision about whether or not Susan stayed (stays) in the clinical trial?  (Yes, and...well, maybe no -- at least maybe no in that we have tried to raise a daughter who thinks for herself, who examines both sides of an issue, who does the right thing when possible.  Far be it from me to assume that she is not able to make an appropriate choice for herself...as long as we are a part of the decision-making process.)

-- Was in my responsibility to tell Susan that I did not think it was worth the risk of continuing in the clinical trial?  (WHO am I to know whether or not it is worth the risk -- it is Susan whose life is restricted...)

-- Should I work to foster regret and misgiving in her, in the hope that she would decide, of her own accord, not to continue?  (While I wondered that, my heart really wasn't in the idea...that's just not how I think about things...)

-- Should I take the knowledge gleaned in my crash course on more traditional OIT (Oral Immunotherapy) and educate Susan -- in the hope of building her confidence, giving her hope, encouraging her onward?  (In pondering this, I realized that, in all honesty, even though I am her mother, I have come to feel strongly that she should be the decision-maker -- at least on the subject of whether or not to continue in the clinical trial.  It is HER body, after all.)


Susan woke up late -- and still tired (we matched on that account) -- and pale.  I worried about how her physical condition might affect her attempt to tolerate a 15 mg dose of peanut.  She HAD had exposure to peanuts for the previous two days...but, would that work in her favor...or not quite so much?  Even though she vomited both days, surely SOME amount of peanut protein had been processed by her body, right?  Who knew? Certainly not me, and as much as I like answers and certainty in life, I had to accept that in this at least, despite the science behind the clinical trial -- we were not likely to have a real answer.

Despite her less-than-perfect physical condition, Susan was in good spirits.  She ate a good breakfast and took the Xantac.  (This was one of the many changes in an admittedly unscientific approach to achieving tolerance of the 15 mg dose the Friday before a three-day weekend.)  Susan got dressed and put on a pair of pretty flip flops (when her feet aren't in skates, she's happiest in flip flops -- and she loves fun ones).  I wondered if maybe she was subconsciously employing one of my tactics in life -- even if you don't feel great, you can at least LOOK great.

I tried to hide the fact that I was tormented by the plan for the day.  I was not at all certain that Susan would actually be able to tolerate the 15 mg dose (that's about 0.6 percent of a peanut).  During the night, I had spent some time re-reading texts I had sent my husband and friends who were closely following along during Susan's food challenge on Wednesday...and...while comparing Susan's reactions during the food challenge day (where the dosing was cumulative) to a single dose was a bit like comparing an apple to a...peanut...I nevertheless felt compelled to try.

Apple:
.5 mg dose, 1 mg dose, 2 mg dose, 4 mg dose
(at which point, Susan had begun complaining that her stomach did not feel quite right)

Peanut:
15 mg dose -- to be given today

And, while I was trying to embrace the idea of giving Susan a 15 mg dose of peanut protein, truth be told, I really didn't feel very good about it.  AT ALL.  Especially having done the comparison I outlined above.

We were in the car by a few minutes after 7:00 am -- wanting to be absolutely certain that we were on time for our 9:00 am appointment.  I was acutely aware of the fact that the CRU was only open Friday morning (it was the start of a holiday weekend)...and I did not want us to be late...especially since we were planning for a longer-than-typical observation period.

Ga was not along for the ride, which spoke volumes about Susan's belief that today's plan would work.  

Susan and I talked on the drive in to the city...about everything, and about nothing.  I had thought the drive time might be a good opportunity to talk about what Susan was thinking/how she was feeling about the clinical trial.  But, there really was not much to say.  She was pretty certain she was in the control group, and she understood that more traditional OIT could still potentially be helpful for her.  Period.  Let's keep at this.  End of discussion.

We arrived in the CRU promptly at 9:00 am and, even though she had been weighed and measured on the previous two days, this visit began in the same way.

And then, with little fanfare, it was time for Susan's dose -- 15 mg of peanut protein.


I felt compelled to take a picture of it -- the poisonous cure.
A smaller dose, but, still -- poison is poison, right?

While I love the idea that this might work for her, that it might change her life, give her freedoms we have only dreamed of, I also hate what it might do to her along the way.

As I looked at the prescription bottle filled with peanut protein, I shivered, thinking about the glimpse into childhood leukemia I had when a friend's child battled leukemia.  I was (and AM) tremendously thankful that we had a choice in this matter.  We COULD walk away...

And yet, as I watched Susan calmly, confidently eat the dose -- believing without doubt this is the key to a better life for her -- I knew that I needed to support her in this, to hide my misgivings, to trust the doctors, clinical trial coordinators and myself...to give her the gift of this incredible opportunity.





We did a few things differently this time:
1)  Susan pre-medicated with 10 mg of Zyrtec.
2)  Susan drank 4 ounces of cold water just after taking the 15 mg dose of peanut protein.
3)  Susan ate a significant snack with the dose (a peanut-free granola bar from Canada that I had with me while we waited for a baked potato to come up from food services which she then rejected because the soy-free cheese left A LOT to be desired...and then Rice Krispies with milk).

We waited.
We observed. 

We talked.  

Susan told the doctor that she thought she was "the control."  While we all recognized that we could not talk about whether or not Susan was a control in the clinical trial, Susan's recognition of the fact that she had not been able to tolerate significant peanut protein DID open the way for some important conversation...

The three doctors involved in this clinical trial had clearly been hard at work.  They had reviewed the protocol.  They had made special note of a single line in the protocol that stated that if a subject was not able to make reasonable, meaningful progress in his or her ability to tolerate increases in peanut protein then that subject could be transferred out of the double-blind tract of the clinical trial and into a tract in which he or she would receive open-label injections of Xolair.  Oh my.  Ohmyohmyohmy.  Incredible, maybe.  Hope before Week 19, should we need it.  (SHOULD we need it -- let's NOT get ahead of ourselves...while it seems Susan is likely a part of the control, there is no true way of knowing.)  That said, there are NO WORDS for how I felt when I heard that.  Hope is a powerful thing.

And again, I was comforted by the tremendous care these doctors have for my daughter. I believe they will not compromise this study, but, I also believe they will do their very best to ensure my daughter's safety.

As a dear friend said, "they are treating her like a person, not just a subject in a study." And for this, I am constantly thankful.

While we waited, we noticed a slight increased in blood pressure...

And skin changes.
(I photographed them right away this time!)

But...no (significant) hives.
  


We agreed that there would be a longer observation period.  Dr. R. was incredible and let Susan decide how much time she thought would be appropriate.  I was thinking 3 hours, but, Susan wanted more.  I was SO not going to get in the way of what felt right for Susan, so, I went with it.  I did, however, suggest some physical activity -- nothing too intense -- just a walk...pulse ox cord and all...



But, where to go?
Not the cafeteria...too complicated.
So, we went to the gift shop, where Susan checked out various gifts, including this "baby giraffe" chair (her skating coach calls her Baby Giraffe because she is so tall) and picked out gifts for Meg and Carl -- and a bag of Fritos for the two of us to share.  (Check out those awesome flip flops!)

I was happy that Susan wanted to eat, and as I was not going to deny her anything, we shared a bigger-than-average bag of Fritos...until eventually I handed them to her and told her that she had to finish them herself, or at least make sure I did not have any more!

The gift shop is not really all that big (that's not a criticism, simply a statement of fact...) and so, after not too terribly long, we returned to the CRU.  Susan finished the Fritos. She contemplated Oreos and milk, but, decided against them...

And then, after 3 and one-half hours of observation, she was ready to go.  She had food on the brain (Zapatista)...and once she was ready to go, I was ready, too.  Susan has always been incredibly good about listening to her body (when she does not feel well, she retreats to her room and sleeps -- allowing her body to repair itself in a way most children do not and cannot do).  I am convinced it is a skill that some people have and others...do not (I fall into the later category, I am certain.)

While I am (unfortunately) confident that there is no road map for this journey we are on, I am clear on several things.  I fully intend to listen to everything Susan has to say about her body...and I am going to support her efforts to ensure those needs are met.

I was so happy to be able to take Susan to Zapatista -- I know we are fortunate in that others living with food allergies do not have the same options we do -- fewer tried-and-true-and-reliably-safe places and (at least for some) AND not the resources to offer such options.  



Over a bowl of incredibly good guacamole, Susan and I talked.  (I forgot to photograph our guacamole before we dug in...Susan helped "stage" the little that remained.)  While Susan remains certain she is in the control group and has been receiving injections of the placebo, she wants to see this through.  She believes in the hope of the future, in the promise of open label injections of Xolair.  

"Mom, SOMEONE has to be the control.  WHY SHOULDN'T it be me."  My dear, sweet Susan -- of course you see it that way.  And I so, so hope you are right.

And so, we entered the holiday weekend with a home dose of 15 mg of peanut protein.  That's not a lot, but, maybe it is better than nothing?  Surely, certainly, it is.

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.
WHAT NOW?!
And yet, I'm just not sure what the positive is in all of this...


It starts with vomit.
   Yuck. 
   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...

Trust
Composure
Certainty
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...

Wednesday, May 21, 2014

250 is Just a Number.

As is 30.
And 180.
And lots of numbers in between.

Today was a big day in clinical trial land.  And, for those of you who are keeping track, this is Week 12.  (This actually matters later, it turns out -- quite a bit, in fact.)  

The drive in was torture.  It took us 2 hours and 27 minutes.  Even my smart new navi could not find us a good route.  I was nervous.  Susan was not -- at least not that she was admitting.  She snuggled into the back seat with her lovie (Ga), her baby blankie (they sort of go together) and her pillow.  She played games on her phone and read...and while she was not talking about it, I knew -- by the very fact that Ga and baby blankie were along for the ride, that some part of her was...uncertain...

The clinical trial visit began as usual -- height, weight, vitals, etc.  But, there were some differences in the way the room was set up for this visit.  I immediately saw (and was reassured by) the presence of the black and red emergency bag.  I also noticed some of those hospital basins -- I don't know what all they are used for, but, vomit was the first thing that came to my mind.  I averted my eyes.  Remember -- I DON'T DO vomit.  I also saw stacks of towels, and a blanket...and a large paper bag with a prescription label on it...and several containers of chocolate pudding (Susan's choice).

The nurses on the Clinical Research Unit helped Susan get comfortable in a reclining chair.  They inserted an IV using the pop-top fizzy device, which Susan prefers (they remembered this -- they are so awesome!), drew blood, placed the blood pressure cuff and after a bit of a discussion which revealed that Susan was unwilling to give up use of any of her fingers (for the pulse ox), they suggested using a toe.  As toes aren't required for the playing of Fruit Ninja, this was a perfectly acceptable plan.




Before beginning, the clinical trial coordinator checked -- did we have Susan's Epi-Pens with us.  OF COURSE.  Was I so thankful she checked -- ABSOLUTELY.  Did I have a moment of thinking -- She's not supposed to get sick today?  Yes.  Yes, I did.

Today, after having a total of 18 injections over the last twelve weeks, Susan was presented with 250 mg of peanut protein (in 10 incrementally increasing doses).  The goal was that she would be able to tolerate consumption of the entire 250 mg of peanut protein without having a reaction.  That's ONE WHOLE PEANUT.  To put this in perspective, Susan began showing significant signs of a reaction after consuming half of a dose of 25 mg of peanut protein during the food challenge at the outset of this clinical trial (One Day, Two Food Challenges).

Just for fun, we stacked them into a haphazard tower.  


If you look carefully, you will see that they are very clearly labeled, with the dose number and the amount of peanut protein therein.  While we stacked them randomly, there was NOTHING random about the dosing for the day -- each of those bottles held a very carefully measured dose of peanut protein which was suspended in a flour, the entirety of which was mixed into chocolate pudding.  

As the clinical trial coordinator mixed the first dose of peanut protein into the chocolate pudding, she began talking to me about the specifics of home dosing, reviewing the types of things we could mix Susan's dose into...and the reality of what we are about to do hit me -- hard.  It is one thing to sit in the Clinical Research Unit while Susan eats peanut...watching ever so carefully along with other medical trained professionals for the first sign of a reaction...

...it is something else entirely different to think about having Susan eat peanut at home.  The enormity of my responsibility in this is...staggering.


With all that swirling through my mind, we began.  
I reminded myself that the home dosing instructions were not for today.
Or even (thankfully) for tomorrow.

And I focused on Susan, and today.

Ten doses.  That's a lot of doses.  And a lot of chocolate pudding.  And, with dosing at 30 minute intervals (with the option of delaying a dose if there were signs of reaction present), I knew we had a long day in front of us.  

With four of us watching (me, two clinical trial coordinators and one of the study doctors), Susan spooned the first dose of that potentially deadly mixture into her mouth calmly.  As I watched her, I marveled at her calm, at her trust.  



The doses were tiny at first, and, really, relatively easy.  It did not take a lot of chocolate pudding to mix the dose well and Susan felt fine.  At first.


9:55 am:  Dose One.
.5 mg of peanut protein -- that's 1/500 of a peanut, or less than .2% of a peanut.  (And yes, that decimal place is in the right place -- I checked with a very smart friend just to be sure -- thank you, Kristin.)

Susan -- who has unrestricted gaming on clinical trial days was happily playing Fruit Ninja, Bejeweled, and Toy Balls (a game we used to play all the time that we sort of forgot about).  Her lovie, Ga, was hanging out with her.  


10:25 am Dose Two
1 mg of peanut protein -- that's 1/250 of a peanut, or about .4% of a peanut.

After Dose Two, Susan continued enjoying her unrestricted gaming.  And, I couldn't resist a tower of empties (read:  completed doses):



I've had several people wonder what we DO while we are at the clinical trial appointments -- especially those that are lengthy in nature.  Let me tell you -- while I try to stay in touch with those who are closely following our visit by text message, photo and or e-mail, what I am REALLY doing during those visits is...watching.  

I have come to really trust the women running this clinical trial.  They are kind, compassionate, thorough and very, very smart.  They see Susan as a real person.  They are interested in her beyond her food allergy profile.  They care about her.  That was especially evident to me when Dr. R., who was attending the food challenge, watched the video of Susan's remarks at the FARE luncheon a few weeks ago.  Like me, she cried.  But, she's not Susan's mother -- she's (just) her doctor.  

As much as the doctors and clinical trial coordinators care about Susan, I know her best.  If she is going to have a reaction, I am the most likely to spot the first sign of it.  MY job during these clinical trail appointments is to watch ever so carefully

10:55 am Dose Three
2 mg of peanut protein -- that's 1/125 of a peanut, or about .8% of a peanut.



Susan did not report any changes after consuming the third dose of peanut protein, but, I noticed that her blood pressure was bouncing around a bit more than it had been...and I thought she started to look ever so slightly red in the cheeks, but, I wasn't sure...and so, I just...kept watching.

And yes, for those mathematically minded who are reading this, the dosing is cumulative, so, if one wanted to play with the math on this, one could -- by Dose Three, Susan had consumed 3.5 mg of peanut protein, or 1.4% of a peanut.  The problem with playing with math like this is that it is hard to know how much of the peanut protein was just hanging out in Susan's stomach and how much of it was being digested...but, there's the math, nonetheless.


11:25 am Dose Four
4 mg of peanut protein -- that's 2/125 of a peanut, or about 1.6% of a peanut.


I could see that Susan's blood pressure was bouncing around a bit, and it was clear by this dose that she was having some skin changes.  Susan was continuing to enjoy her unlimited gaming between doses, and at times, when we checked with her to see how she was doing, I felt compelled to remind her to pause in her game playing and actually thing about how she was feeling.  She doesn't complain, so, we were asking her to do something outside her norm -- and I wanted to be sure that she gave the very important question of how she was feeling a truly considered answer.

At regular intervals, Susan reported that she felt "fine."  

And then, just as the clinical trial coordinator and I were exchanging looks (for we could see the bouncing blood pressure and the skin changes), Susan reported that her stomach was "not feeling quite perfect."  She's stoic, but, we're SO on to her.  

We talked about how her stomach was feeling at length -- by then she had had the equivalent of more than three cups of chocolate pudding and not much else.  Was she hungry?  Did she want to take the rest of her doses in applesauce?  Maybe.  And NO.  I was right there with her -- the idea of applesauce on top of chocolate pudding wasn't very appealing to me, either.  Susan assured us that she was fine to continue.

Through this all, I have been amazed by her calm in the face of what is, essentially, poison to her.  Even when not feeling well, she is still willing to go forward, because...because why?  She trusts us.  She does not want to live like she does.  She believes in the science behind this.  She wants to be a part of the cure.  Staggering, really.  I am sure there are some children who would simply refuse to eat more -- or to do this at all.

With Susan's stack of "empties" growing, we pressed on:


I was impressed with how far Susan had been able to go, but, growing nervous, too.  If she was already showing signs of reacting with an 4 mg dose, would she really be able to get to a 250 mg dose?  I did not voice my concern (although the clinical trial coordinator and I shared plenty of looks) and I told stories Susan has never heard about my childhood to distract (me AND her).  


11:55 am Dose Five
8 mg of peanut protein -- that's 4/125 of a peanut, or about 3.2% of a peanut.

After her fifth dose, Susan asked for the lottery ticket we bought on the way to the CRU. Bad parenting, I know.  To explain, we have talked about how -- at least for us -- being in the clinical trial feels like winning the lottery, so, some mornings we stop to buy a lottery ticket to play while we are at the CRU.  This morning, before I had any idea how bad traffic would be -- and how late we would be as a result -- we stopped for gas.  And, as Susan was checking out her lottery ticket options, she spotted one that is a take-off on her current favorite game, Bejeweled.  How could I resist?  Anyhow, she played her lottery ticket between Dose Five and Dose Six.  (And I told myself that if she felt well enough to want the lottery ticket, that was a good sign...)  


As Susan scratched off her lottery ticket, I noted that her blood pressure was definitely up.  And if you look, you will see that her cheeks were red, and a bit blotchy -- clear skin changes.  Susan reported that her stomach still did not feel "quite perfect," but, she was willing to go forward.  

With our stack of "empties" growing, we pressed forward.  



12:25 pm Dose Six
15 mg of peanut protein -- that's 3/50 of a peanut, or about 6% of a peanut.

With a calm resolution that I think impresses everyone who has come into contact with Susan during this clinical trial, Susan ate the sixth dose of peanut protein in a few big bites.  


As the thirty minute observation period ticked by, I noticed that Susan was less interested in gaming...and remembered from the food challenge that she stopped gaming when the reaction began to increase in intensity.  She wasn't reporting anything different -- her stomach still did not feel good (she rated it a 2 on a scale of 1 to 5)...and I could see increased evidence of skin changes (she was redder...and I think I saw a few hives...and maybe some puffiness)...and her blood pressure was holding steady in the "up" range.

As I watched Susan eat the sixth dose, I started thinking hard about the reality of home dosing.  I had always understood that we would need to make some changes in our busy lives in order to ensure Susan took the dose early enough in the evening that we had a two-hour observation window before it was time for her to go to bed...and I knew she would need to have a parent with her at all times, but, the reality of what this could feel like to do at home was starting to frighten me -- just a bit.  And, a bit like Susan, I don't scare easily -- so this is a BIG admission.



12:55 pm Dose Seven
30 mg of peanut protein -- that's 3/50 of a peanut, or about 6% of a peanut.

After she finished the seventh dose, Susan put down her phone.  Her stomach was still bothering her.  She wasn't sure if she was hungry (entirely possible, as she hadn't had much to eat other than chocolate pudding), or if there was more to it than that.  I was pretty sure it had something to do with the peanut protein we kept sending its way...

We waited.
Susan assured us she was no worse than before...
and we waited some more.

And as the minutes ticked by, I eyed the remaining doses warily...  

60 mg
120 mg
250 mg



They are all just numbers, right?
Right.
But...I kept thinking about the effect of the cumulative dosing, the dramatic increase in each increment and the symptoms of reaction we were already dealing with...

And yet, even as I kept telling myself that they were all just numbers...

If I am totally honest, I will admit that the three remaining containers scared me more than the tower I could have made of the seven empties.  For sure.



12:55 pm Dose Eight
60 mg of peanut protein -- that's 1/10 of a peanut, or about 10% of a peanut.

As Susan ate the eighth dose, I was feeling torn.  This was incredible progress, right?  She was eating peanut.  But, I really didn't like the way she looked, and I was worried...

I wasn't even thinking about home dosing at that point -- I was just thinking how very, very hard it was to watch Susan eating something I knew could kill her.

As the minutes ticked by, Susan reported that her stomach was feeling "not as good" as it had been.  And, as it hadn't been feeling good before, that was really concerning.  After some discussion, it was decided that the ninth dose (120 mg of peanut protein!) should be delayed.

Susan's discomfort increased.  
All gaming stopped.

We could see evidence of more skin changes.
And her blood pressure and pulse were most definitely up...and climbing.

I couldn't just sit and watch any longer.
Even though it made it harder for me to watch her, I climbed into the reclining chair with her.  I wanted to be closer.  No, I NEEDED to be closer.

While nothing ever really felt out of control, I was constantly aware of the dangerous edge we were walking.

As Susan's reaction continued, the team decided to administer 41 mg of Benadryl IV push.  

That's a pretty intense way to get Benadryl...and it knocked her out.



Once Susan started reporting more significant signs of reaction, I was less able to keep really good track of the timing of things...so, I'm much sketchier on the details about time and the like from this point forward.

But, I do know this.  While Susan rested, the doctor and clinical trial coordinator explained to me that, according to the protocol, if the Benadryl helped and Susan felt able, they needed her to attempt to take the next dose of peanut protein.  

120 mg

I was stunned, but, tried to control my emotions -- Susan has been very clear from the beginning that this is not just about her, and -- if the study protocol called for an additional dose, I wanted to allow her to try it...if she wanted to.  And...I was pretty sure she would want to.

But...by then, I was scared.  As I watched her, I found myself thinking that there was NO WAY we would be able to manage the home dosing -- it was too scary, the symptoms were too intense...the risks were -- simply, too (way, way TOO) great.

Time passed...and the team eventually announced that if Susan was going to attempt the next dose, she needed to do it.  They roused her, we explained, all the while a lump in my throat -- (wondering whether or not I was, in fact, being the best possible parent to her at that moment)...and she agreed to attempt the 120 mg dose.  

And a voice inside my head was pretty insistently saying, "SHE DOES NOT HAVE TO."  And yet, if this is not all about her (as she clearly and repeatedly has said it is not), then she almost did have to.


?? Dose Nine
120 mg of peanut protein -- that's about half of a peanut.  (Staggering.)

After some discussion, the team decided to have Susan start with half of the 120 mg dose, which essentially meant that she repeated the 60 mg dose...  

A sleepy Susan gamely spooned the 120 mg dose into her mouth (I don't have pictures -- I wish I did, for stamped in my mind's eye is how unwell she looked in that moment...and how resolute she clearly was).  And then, with alarming speed, Susan stopped eating, and -- on the verge of tears -- said she was going to throw up.  

She vomited. 
And she vomited...
And she kept vomiting.

For those of you who haven't been along for the whole ride, I *DON'T* do vomit, but, I gamely hung in there, hugging Susan and assuring her she would be okay -- wanting to be certain she did not allow fear into our space if at all possible.

After she was done, she laid back in the reclining chair and started to drift off.  I exchanged a look with the doctor, who quickly told Susan she had to stay awake.  We forced her to talk to us, and within minutes, she was complaining of feeling like something was "stuck" in her throat...at first she thought it was just from the vomit, but, as it rapidly worsened instead of improving, it was quickly clear to all of us that vomiting had not stopped the reaction (sometimes it does, although that hasn't been the case for Susan in the past).

I got to find out what was in that big red emergency bag...  



...Epi Pens, and assorted pre-measured IV-ready medications (among other things...that I'm surely thankful I did NOT see!).  

Susan bravely assisted the doctor in administering an Epi-Pen...and within minutes, she was much better...but exhausted.  We made her stay awake, talking to us, until we were certain the Epi-Pen had truly stopped the reaction.    

It was then -- as the clinical trial coordinator and nurse tidied up the space and the doctor made notes that the enormity set in for me.



I was cold -- ever so cold...and shaking uncontrollably.



As I sat there, hugging myself, I couldn't help but wonder if we really want this that much.  For the truth is, no matter what happens, there IS a price to pay.


Turning that over in my mind, I climbed into the reclining chair with Susan -- wrapping her in my arms, holding my brave, brave girl securely.  Even though her vitals were being carefully monitored, I wanted (needed) to be right there with her.  As I stroked her hair and listened to her breathing, I marveled at her stoic bravery -- at her determination to see this through.


Hours later, after examining Susan at regular intervals and having her eat something (Oreos and milk -- a slight improvement over the pudding from earlier in the day) the doctor sent us on our way.  We left bearing more snack packs of Oreos (Susan actually looked at me for my permission before accepting them -- and all I could think was like I would deny you ANYTHING at this point?) and a large hospital tumbler filled with water. 

I had a number -- 180.  That's 180 mg.  Best calculation (guess?) was that Susan had ingested 180 mg of peanut protein before having a full-blown anaphylactic reaction.  Of course, that was a cumulative dose...and she vomited up a tremendous amount of peanut protein and chocolate pudding.  (And YES, I know, I DON'T DO VOMIT, so, I just might be exaggerating, but, EVEN the doctor and the clinical trial coordinator noted that she had vomited "a lot.")

We were sure Susan was dehydrated, and, knowing that we (UNBELIEVABLY) were going to be back in the CRU the following day to try to confirm Susan's ability to tolerate a home dose of 30 mg, we all wanted to get Susan to the best possible place physically.

Susan was so tired that all she wanted to do was sleep more -- that's what a massive dose of Benadryl and a full-blown anaphylactic reaction will do to you -- but I tried to get her to drink a few sips of water every so often.  And then, she needed a bathroom stop, and even though we were only about 12 minutes from our house, I was not going to deny her anything at that point...so, we stopped at a Thornton's in Highland Park (yep, we were THAT close to home!)

Enter the best thing of Susan's day (at least until that point):
  

Never underestimate the power of a Slurpee.  (Actually, this was a Freezee, but, still...)  It is clear, she is wiped -- pale, with circles under her eyes...but, she mustered a smile, saying "this will be good."  She was more right than she knew.

Fluids.
Sugar.
Fluids.

And all of the sudden, Susan was ready for dinner.  Not Zapatista, but, Michael's -- for a cheese potato.  I'd have let her eat anything she wanted (as long as there was no peanut involved!).

We stopped at Michael's Chicago Style Red Hots in Highland Park.  While it might seem a strange choice for a vegetarian, and I was once skeptical of their ability to handle food allergies, over the years, we have become loyal customers.  While they have a wide array of salad toppings (some dangerous for Susan), they will make anything we order using ingredients that come from their original containers, in the back, on a sanitary work surface.  They understand my paranoia about the microwave, and never "cook" our potatoes...and so, dinner was a cheese potato -- both kinds of cheese, please -- oh, and not cooked.  And while I feel the need to remind them every time, enough of the staff in their know us that I honestly believe I could stand there and not say a word and they would still get it right.  Pretty incredible.

And then, because we had missed most of an incredible day, and I wanted to offer Susan something special (the moon, really, had I been able!)...I hauled the cushions for our "green chair" (a double-wide, incredibly comfortable chaise lounge) out of our basement and set it up for Susan...who ate her potato there, talked of reading to Amelia there some day and then read her own book until she was ready for bed.



And now that one of the longest days of my life is over, and I have reflected some, I can say this:


I want this for her -- badly.
Even now.


I will not let my fears and misgivings get in the way.  
For, if possible, Susan wants this more.
She said as much as we stood in line at Michael's.


And a tiny, insistent little voice in the back of my head wonders why Susan wants this SO MUCH...allowing my fear that living with food allergies -- despite all we do to make it NOT about the food...is way more terrible than I can even imagine...