Photo by Rebecca Gould Photography

Monday, August 25, 2014

E-Mail to Susan's Seventh Grade Teachers (Good Overview)

Good Morning.

I hope your school year is off to a good start.  I waited to write this e-mail until after the first few days because I knew it would be long, and I can only imagine how chaotic and busy the first few days of school are.  

As you all know, our daughter, Susan, has a life threatening peanut allergy.  She has had airborne and contact reactions to peanut protein in a number of settings, including on an airplane, in a movie theater and while in a gymnastics class with a child who had eaten a peanut butter sandwich on the way to the program.

As I think you all know, Susan is in a clinical trial at Lurie Children's Hospital (downtown Chicago).  Because we were frightened by the risks Susan faces every time she leaves our house, we actively and aggressively pursued treatment options once we understood the seriousness of her allergy. 

We were thrilled when Susan was enrolled as the second of nine subjects in the PRROTECT Clinical Trial in February of this year.  This is a double-blind study of Xolair, a medication believed to inhibit the body's autoimmune response to allergens.  The goal is that all study subjects (including the two control subjects who will receive placebo at the outset of the clinical trial) be able to consume 2000 mg (or eight peanuts) by the end of the clinical trial (which -- if all goes perfectly -- takes 26 weeks).  

I am e-mailing you because we feel it is very important that Susan's teachers (and other staff at Northwood) understand what her experiences in the clinical trial have been like thus far -- and so that they can have some sense of what to expect in the future.

Susan's experience in the clinical trial thus far has been quite difficult.  She had a delayed, multiphasic anaphylactic reaction to the peanut she consumed during the intake evaluation (all subjects had to react to a low dose of peanut in order to be enrolled in the clinical trial).  After a three-month period in which Susan underwent clinic visits every two weeks to receive three injections of either Xolair or the placebo, she had an anaphylactic reaction during the initial rapid desensitization visit (in late May) and experienced another anaphylactic reaction the following day.  Despite the addition of multiple medications and decreasing the rate of desensitization to peanut, Susan was never able to tolerate a clinically significant peanut dose.  When school ended in June, Susan was barely tolerating a 45 mg dose of peanut.  Shortly after school ended, her dose was increased to 60 mg, which she could not tolerate.  She experienced hives, nausea, extreme fatigue and bouts of intense vomiting.  

The timing of the rapid desensitization was far from ideal, as the school year was drawing to a close when Susan was feeling her worst.  Fortunately, the 6th grade team at Northwood supported her, ensuring that she knew what she would be missing when she was absent, providing assignments and sending supportive and encouraging e-mails and text messages.

In late June (after an extremely difficult month), the Principle Investigator of the clinical trial determined that Susan had likely received the placebo and petitioned the Clinical Trial Coordinator for permission to move Susan to what is called the "Open Label Injection" arm of the clinical trial.  In July, Susan essentially started the clinical trial  over, beginning the build-up phase of Xolair.  Even during the absolute worst of it all, Susan was steadfast in her commitment to the clinical trial -- hoping that she will not only help herself but also countless others.  

Susan gave the opening remarks at the Food Allergy Research and Education Luncheon in May.  I am including a link to the YouTube video. The quality of the first 30 seconds or so of the video is quite poor, but I think it captures well both why she is so committed to the clinical trial and who she is as a person.  I know I am her mother, but I believe it is well-worth watching:

Unfortunately, the most intense part of the clinical trial will begin in mid-September.  And while I know the timing is far from ideal, we are hoping that Susan's 7th grade teachers can provide the same type of support that her 6th grade teachers did.  (We are also hoping the rapid desensitization to peanut will not be as difficult now that Susan has definitely been receiving Xolair injections).  

At this point, Susan is on a daily "maintenance dose" of 30 mg of peanut (that's 12% of a peanut).  This is the highest dose Susan was able to reasonably tolerate and it is believed to be very important that she continue consuming peanut on a daily basis, or her allergy might worsen.  There are many requirements regarding the daily peanut dose, including the timing of the dose (as close to 24-hour dose intervals as possible), the restriction of any and all physical activity and (once she begins updosing in mid-September) parental supervision for two-hours post dose.

Throughout the clinical trial, Susan will continue to carry Benadryl and Epi-Pens in her purse, which she keeps with her at all times.  She is also wearing a Medic-Alert bracelet.  Emergency responders will have access to information regarding the clinical trial should they need to access her profile through Medic-Alert.

As I think you all know, we met with the Principal, Assistant Principal, Associate Principal of Student Services and the Social Worker (I used their names) before school started to discuss the impact of the clinical trial on Susan's school attendance.  Susan, my husband and I were all VERY relieved after our meeting, because it felt like we developed a very workable plan with the support of the school district.
There are three main issues: 
1) timing of daily dose
2) absences for clinical trial appointments (some of which will be all day)
3) management of symptoms while at school (if necessary)

We are thankful that the 7th grade schedule is what it is, with PE and the CAPE classes the first two periods of the day.  And, fortunately, Susan's Spanish immersion class and Accelerated Math class are the last two periods of the day.  We have spoken with the Clinical Trial Coordinator and will schedule Susan's visits as early in the day as possible in order to try to ensure that she is back for those academically rigorous courses whenever possible.

We developed the following plan:  
1) Susan will take her peanut dose at 7:30 am.  Between now and the updosing (which will begin in mid-September), Susan will attend school after taking her maintenance dose at 7:30 am.  She will not be able to physically participate in PE.  Susan's doctors have approved of this plan because the 30 mg dose is essentially a maintenance dose.  Once she begins weekly (or more frequent) updoses, she will take her peanut dose with me at approximately 7:30 am, and I will supervise her until approximately 9:30 am. As long as she is feeling well, and has no concerning symptoms, I will bring her to school in time for 3rd period.  

Unfortunately, Susan will miss PE and Art and Music (her next CAPE segment).  I am looking forward to collaborating with those teachers who classes she will miss entirely so that I can ensure Susan learns what she needs to learn.  She is a competitive figure skater who also plays travel soccer, so fortunately the missed PE classes will not result in the loss of the only opportunity for exercise in a given day.  Susan also plays viola in the MYA orchestra, and I am hopeful that we can develop a workable plan for covering what she will miss in Music class.

2) We agreed that we would do our best to schedule appointments early in the morning (so that Susan can be back for as many of her academic courses as possible), and that we will schedule them on days when there is no school (if possible).  I will provide Susan's teachers with as much advance notice of her absences as possible, with the understanding that given the uncertain nature of this process, the plan can change at any time.  As of now, we have the following appointments scheduled:
-- Tuesday, September 2nd at 9:30 am (this should be a 1-hour appointment)
-- Monday, September 8th at 9:30 am (this should be a 1-hour appointment)
-- Monday & Tuesday, September 15th & 16th (the first is an all-day rapid-desensitization to peanut appointment;  the second day could be shorter)

3) In the Spring, when Susan was not tolerating the updoses, she experienced rapid-onset nausea followed by violent vomiting.  While we are hopeful that she will fare far better now that she has received the Xolair, we did discuss a plan that includes her being allowed to leave the classroom upon her announcing that she needs to leave and a pre-designated student being sent to follow her.  She will attempt to make it to the nurse's office, but understands that she can use any bathroom along the way (including the one in the Staff Lounge should she need to).

We scheduled a follow-up 504 Plan meeting for Tuesday, September 23rd, by which point we will have a much better understanding of how the clinical trial appears to be going.  I will keep you all informed by e-mail.  If you wish, please feel free to follow along with my blog, which is called Eating Peanut.  You can find it at:  

Susan's "Week 0" was in July.  This is Susan's "Week 9."  Her "Week 12" is the week of September 15th.  This is a significant week as this is when the rapid desensitization to peanut occurs over the course of two days.  We anticipate that Susan will continue to have clinical trial appointments through the early part of next year (and possibly longer).

I know many of you are just meeting Susan for the first time this year.  Let me assure you that she is a conscientious student and a very hard worker.  She will do all that she can to keep up with her work, and, if need be, we will support her efforts with outside supports.

We are thankful beyond words for the support we received in planning the first part of Susan's 7th grade year, and look forward to working with Susan's teachers and administrators to ensure that she has the best possible school year while pursuing this potentially life-changing treatment opportunity.  It is incredible to go into what is likely to be a very stressful period of the clinical trial feeling like we have the support of the school district.

Please feel free to ask questions or share any concerns you might have.  We will do our best to answer your questions and address your concerns.

Thank you.

Friday, August 22, 2014

"Next Year" Is Here

"Next Year" is here.  

Last Spring, at several difficult times, Susan and I reminded each other that "Next Year" (read:  "Next School Year") could be infinitely easier.  We talked about what it would be like to eat out without worrying about cross-contamination with peanut and dreamed of a lunchroom experience where she would not be restricted to a "Nut Free" table.

Next year is here -- and nothing has changed.
And yet...maybe, just maybe something HAS changed...maybe the open-label Xolair injections Susan has been undergoing all summer have decreased her reactivity to peanut -- but we have no way of knowing...(at least not just yet)...

For all intents and purposes, nothing has changed.
We still eat at our handful of "tried and true" restaurants...
And Susan still sits at a Nut Free table at school (with a handful of tried-and-true friends...).

And yet...maybe something HAS changed.  Susan is in seventh grade this year.  In our community, this is the year year-of-the Bat & Bar Mitzvah...think parties, restaurants, enough unknown food and potential risk to boggle my mind.  When well-intentioned friends have asked how we planned to negotiate this difficult time, I always answered honestly "I do not know."  I have worried about this year extensively -- late at night and into the morning.  In the past, I would have tried to research in advance what was being served, to determine what would and would not be safe -- to make a plan -- and when necessary, to provide Susan with food and treats that were comparable to the menu, in an effort to minimize the ways in which she felt different.  

But, after much discussion (and in light of the no-new-food restriction we agreed to for the duration of the clinical trial) Susan has decided to "pre-eat" and to simply stash a safe treat in her purse.  For events where there might be a "real meal," she is going to carry a larger bag with a GoPicnic in it (she can eat everything but the fruit leather, which could be fine -- but falls into the "new food" category).  She is ready -- and she is most decidedly NOT worried.  She said, "Mom, it's not about the food."


While nothing has changed on the face of things this year, many things have changed for Susan, within Susan.  She is stronger, braver, and far more certain of herself.  She has taken charge of her food allergies, and while she may not have beaten them yet, she is not going to allow them to define her.

As we head into Susan's seventh grade year, I am reminded that, as with many things in life, it is often far more about the journey than it is about the destination.

While I remain tremendously hopeful that Susan's reactivity to peanut will decrease as a result of the clinical trial, I find myself increasingly aware of the growth that has occurred -- in Susan (and maybe, just maybe beyond) along the way.

Thursday, August 21, 2014

Oh, The Places We've Gone (with Peanut)

(A Summer Retrospective)

I'm pretty sure seventh graders don't write essays entitled "What I Did This Summer," but it is my most fervent hope that if Susan were asked to write such an essay, the clinical trial would not be the top of the list.  For, while the clinical trial dictated much of what we did and how we did things this summer, I do not believe she let it define her.

In June, when Susan was trying to updose weekly and she was struggling to tolerate the ever-increasing peanut doses, our days revolved around how and when and with what Susan would take her peanut dose (not -- not ever where, for "where" was never a question -- she always took her peanut dose at home in those difficult days).  Who could blame her for wanting to be at home when she took her peanut dose?  The ONE time she took it outside our home (the FARE Conference), it was exceptionally difficult as she fought nausea and became covered in hives in public.  As unpredictable (and unpleasant) as things were, I completely understood and supported her unwavering desire to take her peanut dose at home.

Even though Susan's tolerance eventually increased and she was able to take the 30 mg peanut dose (that's 12% of a single peanut) fairly reliably without issue, she remained steadfast in her desire to take her dose at home.  And I never -- not even once [even though occasionally I found myself thinking how much easier it would be if she would (could?) take her dose elsewhere] suggested that she do anything other than take her peanut dose at home...I felt it was important that she feel safe in her own home when she took her peanut dose.

Eventually, when the doctors determined that Susan was clearly not able to tolerate the updoses and petitioned for permission to move her to the open-label injection arm of the clinical trial prior to Week 19, they also decreased her home-dose from 60 mg of peanut (24% of a peanut) to 45 mg of peanut (18% of a peanut).  When Susan was still struggling to tolerate the home-dose of 45 mg, the doctors decreased the dose to 30 mg of peanut.  Even with two decreases in her home-dose, Susan still struggled to tolerate the peanut, with significantly delayed episodes of nausea and vomiting, hives and intense fatigue.

As June drew to a close and we prepared to celebrate the Fourth of July, I had pretty much given up all hope of having any real summer.  I could not leave Susan alone anywhere, at any time.  While there was no question that that was the right choice (the only way to ensure Susan's well-being), I was tethered to Susan in a way that I -- even without my social worker hat -- am certain is unnatural for any 11-nearly-12 year old girl.  Tethered to Susan as I was, Susan was tethered to her peanut dose.  I felt shackled by invisible chains -- restricted in ways only those closest to us could even begin to understand...

It is hard to find words to describe the sense of hopelessness and despair I felt as I faced the month of July.  Susan was sleeping, skating, napping and taking her peanut dose.  Oh -- and she was reading (some), but far less than usual.  She simply had no energy for anything else.  Gone were the lazy afternoons at the water park, the walks along the beach, our time spent reading together on the giant green lounge chair in our side yard...for Susan lacked the energy...the simply hang out. 

I was deeply saddened that the clinical trial was taking so much out of her...and found myself wondering how we could endure a summer that took more out of us than restored us.  I checked with Susan regularly to be sure she wanted to continue.  Always optimistic, with a cup that is always way more than half-full, Susan assured me that she did want to continue.  Even at her most fatigued, grouchiest place, Susan felt certain that she had endured the worst.  She believed the Xolair would be effective for her, and I honestly believe she never truly considered withdrawing from the study.

The pragmatic side of me wanted to believe, too. 

I watched the YouTube video of Susan's remarks at the FARE (Food Allergy Research and Education) Luncheon in May countless times, crying every time...even while I drew strength and certainty from her conviction.

I recommitted time and time again in my own mind, all the while wondering how we could possibly carry on.  I wrote blog entries in my head, in the margins of documents I was reviewing for work, on notepads, even in draft e-mails to myself.  I had so many things to say, and yet I never finished any of them.  I wasn't quite sure what to say...

Then, one day in July we had a dilemma.  Susan was competing early in the morning -- and again in the afternoon...and she wanted to go to the pool after her second skate of the day.  Because of the distance between our house and the rink, and the requirement that skaters check in at least an hour before their event begins, our plan was to stay at the rink for the day.  In order to fit it all in, the ideal time for Susan to take her peanut dose was between events.  I think I realized the issue before Susan did -- that if she wanted to take her peanut dose so that she could go to the pool after she finished competing, she would have to take her dose AT the competition...

As the realization dawned on Susan, the silence hung between us.  I silently commanded myself not to say anything.  I wanted to be ever-so-careful not to push her to take her dose at the rink...if she were going to do that, it had to be her decision -- absolutely, positively her decision.

She turned it over in her mind -- weighing it all (I could see her thinking...could see her working through all the scenarios) -- the competition, skating, the rink, her skating friends and coaches -- against the pull of the pool.  She said, "I want to take my peanut between events."  I offered the car, a nearby Starbucks, the parking lot -- but once she had determined to take her peanut at the competition, she was clear that she was not going to let it detract from her experience at the competition.

So...I packed our trusty Bullet Blender, pre-measured peanut and chocolate whey powder, knowing I could buy milk at the competition.  In between events, I mixed up her dose.  There was a spot of chocolate whey powder that just wouldn't mix in -- so after carefully examining the problem, Susan's coach took on the task:

Sitting in the locker room with Alexa (a dear skating friend) and their coach, Susan drank her peanut dose.  They all had such fun with it that I was worried she would spill it...but, of course, she was "super-careful..."

My heart lifted when Alexa checked in with Susan about thirty minutes later:  "'s that peanut thing going?  You all good?"  It was so casual...and yet so kindly aware that I was moved almost to tears. 

And with that, suddenly, we had turned a corner...(although I did not know it for certain at that point).

As we were driving home I found myself thinking that maybe...just maybe we might have some tiny bit of summer after all...

Faced with a similar dilemma the following day, Susan decided to take her peanut dose at Ravinia, an open-air concert venue near our house during the annual Kids Go Classic event.  (She did this so that she could maximize her time at the pool and still have a shower before the event.)  We had two of her friends -- Natalie and Lydia -- with us.

They were awesome -- cheering her on as she took her dose and then sitting with her instead of wandering the grounds as many concert-going students were doing.  

When I texted their mother to see if I could include a picture of them, she replied, "Fine by me.  You know we really do support you guys in this!  Brave, determined, selfless, hopeful are a few of the words that come to mind about you all and what you are doing.  And none of those words quite capture it.  It's more than that.  The missing element is the word that describes not just being satisfied with the way things are and being willing to sacrifice to change it."  I was deeply moved by her profound empathy then...and still am now. 

As the summer has gone on, Susan has taken her peanut dose in a variety of places...demonstrating to me again and again that she will NOT be defined by this. 

At the Pleasant Prairie Rec Plex in Pleasant Prairie, Wisconsin.
(Asking for a straw...with her peanut dose in her right hand...SO not her thing...but the kind clerk made her smile -- he had watched me blend her peanut dose, so he knew something was up...)

After the Grassroots 2 Champions program in Pleasant Prairie, Wisconsin...with coaches Chris Conte and Nick Perla.

In the Second Star Club at Toyota Park, where the chef and staff have consistently gone out of their way to ensure that Susan has a safe and fun experience -- from a thorough cleaning of the club before the game to not allowing any peanuts in the Second Star Club before during or after the game, new oil in the fryer...and on and on.

With Sparky, in the Second Star Club at half-time during the Chicago Fire vs. New York Red Bulls game.  

At Highland Pop Gourmet Popcorn & Fudge Shop, our local allergy-friendly popcorn (and fudge and Italian Ice) shop.

We stumbled across Highland Pop just as it opened in February of 2012 and were thrilled to find that they are peanut free, tree nut free AND gluten free.  With an ever-changing and always yummy popcorn flavor menu, visiting Highland Pop is a guaranteed adventure.  The owners' son developed food allergies as a teenager, so they know first-hand how difficult life with food allergies is.  The day we stopped in there, they gave Susan a bag of Highland Park Mix to go with her peanut dose.

And at Key Lime Cove, where we took a group of Susan's closest school, skating and soccer friends for one last bit of summer fun...(Susan took her peanut dose just as we were finishing, wanting to be sure she could shower all the water park off herself 2 hours later, before going to bed...)

I know we are on a course that will be difficult at times...and I feel Week 12 (the two-day rapid oral desensitization to peanut) creeping up on me...but, for now, I am feeling immensely grateful for Susan's good friends who have supported her through her difficult summer...and I have decided to simply savor the summer we did have...

Wednesday, August 20, 2014

Susan's 504 Plan

Like many parents I know, I had a back-to-school list of things to accomplish with or for all of my children.  Susan's list looked something like this:

-- Dr. Joe (tooth cleaning)
-- Dr. Robb (she's going to get braces...)
-- Backpack (to replace the much adored 4-year old one she had from Pottery Barn Teen)
-- School Supplies (to enhance the "kit" we ordered through school -- think fun erasers)
-- Shoes (her feet grew 2 sizes this summer!)
-- First-Day Outfit
-- Haircut (we'll get there, Amanda, I promise!)
-- Revise 504 Plan

While everything felt doable, the last thing on the list -- revisions to Susan's 504 Plan made me feel slightly queasy every time I thought about it.  Just thinking about Susan's 504 Plan (and the revisions we would need -- and want -- this year) kept me awake for hours over the course of the summer.  (For those unindoctrinated, a 504 Plan is a federally mandated plan that provides for accommodations for students who have an identified medical issue or disability that "substantially limits" major life activities.)

While "haircut" has not been checked off our list (here's hoping we'll fit it in soon, Amanda!), everything else -- including Revise 504 Plan -- is done.

Many parents of children living with food allergies face this task each year -- for some, revisions to the 504 Plan are made at the end of each school year, in anticipation of the upcoming year.  For others, this is a project that the school district tackles at the beginning of each year.  While our district has typically started the 504 Plan revision at the end of the school year, no one approached us to ask that we do that in May and given all that we had going on in the clinical trial, I was just as happy to let it go -- knowing that we would have to address it when school started in the fall, and feeling fairly certain that any revisions we made in the spring would simply be guesses for the fall.

While most of the back-to-school tasks were relatively simple, although some required a bit of planning -- calling the dentist, for example, to schedule an appointment, finding a time that worked, etc.  When I thought about Susan's 504 Plan -- and considered the identified accommodations in contrast to the accommodations I knew she would need, I was nearly overwhelmed.  I knew Susan's attendance would be spotty as she completed the open-label injection/build-up phase of the clinical trial, and I knew that she would miss school for the rapid desensitization in the middle of September.  I also knew she would miss school for weekly updose appointments...and that somewhere in her day we would have to find a time for her to take her peanut dose...

As the summer wore on, and I turned the plan and possible accommodations over in my head endlessly, I felt that everything was doable...except the daily peanut dosing.  The daily peanut dosing requires careful planning.  The dose is to be taken no more than 24+4 hours after the last dose and no less than 12 hours after the last dose.  Ideally, the dose is taken as close to 24 hours after the last dose.  With morning updosing appointments (necessary given Susan's history of delayed reactions), timing becomes a problem.

For example, when Susan has an 8:30 am updosing appointment, she typically takes the increased dose by about 9:00 am, maybe 9:30 am.  For obvious reasons, the clinical trial coordinator works to keep updosing appointments early in the week, so that their subjects do not go into a weekend with a relatively new (higher) dose.  So, if Susan has an updosing appointment on a Monday at 8:30 am, she really has to take her dose on Tuesday by 1:30 pm (earlier would be ideal, of course).  But, that's in the middle of the school day...

We struggled with the timing of the daily peanut dosing in the spring, too, but with the end of the school year in sight, simply cobbled a plan together day after day hoping to hold it together until school let out.  And as the start of school bore down on us, I honestly could not see a real solution for the timing of Susan's daily peanut dose...and that's what kept me up at night.

It was hard to put this in writing, because it seemed almost too good...too be true.  And is true.  We have a 504 Plan for Susan.  And, we accomplished it in one (relatively short) meeting.  [Arriving at a 504 Plan for Susan has never been this easy...never.  And last year it was...downright difficult.  While I don't know it for a fact, I have long since felt that -- despite our efforts to be rationale, reasonable people -- administrators and other staff in our district cringed in advance of having to deal with us (maybe even while dealing with us).]

I walked out of our meeting elated.  Relieved.  I felt both physically weak...and nearly giddy at the same time, as I let go of all the uncertainty-driven stress that had built up over the summer.  I texted several close friends and called another.  As I shared my news, and talked about feeling like we were a part of a team, my friends responded with "That's incredible" and "Awesome."  

When I shared our plan with a friend who has two children with special needs in our school district she was...less than enthusiastic, pointing out many potential problems.  When I shared the plan with several others, their reactions were similar -- some wondered why Susan would get "special" treatment, others wondered about the necessity of our plan, the wisdom of our plan, and on and on.  As I talked about our plan, I was struck repeatedly by the feeling that some of the parents were...envious...maybe even something more (could that really be possible?) of our plan.  (And even as I thought that, I wondered how anyone could feel that way, given the road Susan has traveled...)  

I stopped sharing our plan with others.
And then I found myself thinking -- if I am not talking about our plan with those in our life about what our plan is, how can I blog about it?

My blog has become a place where I write openly and honestly about what is happening in and as a result of the clinical trial.

What started off as an e-mail to family and close friends has morphed into something more...something that I hope helps a myriad of ways.

With a deep breath...(and a hope for understanding) is our story:

A few days before school started, we had Susan's 504 Plan meeting with assorted professionals (read:  the Principal, the Assistant Principal, the Social Worker and the Associate Principal of Student Services) at Susan's school.  Susan, my husband and I all attended.  I was beyond nervous before the meeting. 

The backstory is simple.  We were the catalyst behind our school district's development of a (groundbreaking) food allergy policy when Susan was in Kindergarten.  While the policy was a huge improvement over the nonexistent policy, with it came tremendous controversy -- hate mail (it WAS that long ago), viral e-mail and irreparable rifts in friendships once held dear.  Even now, while I still feel the pain of friendships lost, I know I would do it all again...

Protected by an administrator who understood food allergies well, Susan's elementary school years were better than we could possibly have imagined.  However, the move to middle school left a lot to be desired.  Since I do not want to create any ill will, let it suffice for me to say that we retained an attorney who specializes in special student services after our 504 Plan meeting one year ago (just before Susan started sixth grade).  While we eventually arrived at a plan, it has never been something we have fully embraced.

Knowing that Susan needed far greater accommodations than she ever has in the past, I went into the meeting with a pit of fear in my stomach.  While I was willing to compromise, I honestly could not see where or how compromise would work.  The plan I had arrived at (and which I hoped the district would endorse) was the only workable solution I could think of.  (I was open to other ideas, but, having worried at the problem of the timing of Susan's peanut dose all summer long, I felt our options were pretty limited.) 

I dreaded having Susan at the meeting (some of our 504 Plan meetings have been rather heated), but I also felt strongly that it was important that the decision makers witness first-hand Susan's commitment to the clinical trial.  I have been her strongest, staunchest advocate over the years -- and while I have been unwavering in my commitment to ensure her safety -- I was not really prepared for her to witness the type of battle we have sometimes had.  Right or wrong, I worried that if there was not consensus, if I had to advocate for her, she would in some way interpret it that some of those in the room were not as concerned for her safety as we are (and while we have had our issues, I never thought that was the case -- sure, sometimes some of the people involved needed to be educated, to be more informed -- but I never felt that those involved did not genuinely care about her).  While she is a mature, wise 11 (nearly 12) year-old, I worried that she would not be able to process the subtleties of the meeting.

As Susan, my husband and I walked into her school, I found myself trying to find something encouraging to say.  Susan is perpetually positive and optimistic -- with a calm exterior.  She always sees the best in people and walks through life expecting things will go well.  In a quiet, understated way, Susan is a glass-half-full (or maybe-even-overflowing) kind of kid -- not in a bubbly, cheerleader way, but in a steadfastly calm and certain way.  She just knows it (whatever it may be) will work out.  I was deeply concerned that our meeting might shake Susan's world-view to the very core.

My concerns were compounded by the fact that I knew we would be meeting multiple new people (some new to the district, some new to us) -- a new Principal, a new Associate Principal of Student Services, (who had called me after-hours on her first day -- a good sign, I told myself, that she was taking this seriously...), and an Assistant Principal (who had been tremendously helpful over the phone, but still...who knew?).  While last year was tremendously difficult in many ways (we never did see eye-to-eye on Susan's 504 Plan, for example...), I felt that over the course of the year the teachers and administrators came to see Susan as a real person -- not just some kid with food allergies.  I knew we would be starting over, and I was afraid of the ground lost.

While the "playing field" has shifted as the result of significant staffing changes, as I prepared for our meeting, I could not shake the worry that clouded everything I did.  For, while I believe we are (at least generally speaking) rational people, it seems that (at least in this school district and in our community) as a result of our advocacy efforts, we are viewed as...?  (I'm never really sure... -- not rational...maybe not reasonable?  Maybe...even worse?) 

And yet, even now, nearly eight years since our initial advocacy efforts in the school district forever changed the landscape of our friendships -- altering our social lives, challenging our sense of belonging, shaking to the very core our beliefs -- I would do it all again.

Despite what some people believe, it has NEVER been just about keeping Susan safe.

When we pushed our school district to write a food allergy policy, our desire to keep Susan safe `was only part of the equation.  Our efforts have been for all students living with food allergies, for food (or dietary restricts) should not define anyone.  I have always believed that understanding is the key to management of food allergies (and understanding requires education).

Even now, Susan's participation in the clinical trial goes way beyond a potential treatment for HER airborne and contact allergy to peanuts.  While we all hope for an incredible outcome for her, if the Xolair is as effective as initial results suggest it to be, it could be a huge step in the treatment of food allergies for hundreds, thousands...maybe more.

So, as I walked into our 504 Plan meeting -- flanked by Susan and my husband -- I did so with tremendous trepidation.  While I am not sure I can articulate why, it was tremendously important to me that our 504 Plan be good not just for Susan, but, for others like her.

It is awfully difficult to advocate for something (anything) if those across the table from you think you are irrational, difficult, uneducated, biased, inflamed...or worse.  So, as I entered Susan's school, my stomach churned.  While in years past our 504 Plans had room for give and take (even if I did not like it), I felt there was little room for negotiation in the revisions we needed in Susan's 504 Plan for the year.

While management of Susan's peanut dosing is complicated in many ways (medication in the morning, medication just before the dose, food and water with the dose, restrictions on activity level, showering, and the mandated supervision), it is very easy in other ways.

I lay awake many summer nights (listening to Susan's deep, even sleep-breathing) wondering how in the world we would manage school with the most intense part of the clinical trial beginning just three weeks after the school year began.  While I had many concerns, I always circled back to the question of "When to dose?"

We had Susan's 504 Plan meeting at 7:30 in the morning.  When I realized that the timing of our meeting was unfortunately (or fortunately?) at exactly the time Susan had been taking her peanut dose, I paused for a minute.  After all, we fought for a peanut and tree nut restriction in our district...should I, would I allow her to walk into the school with peanut protein?  After significant internal debate, I decided it needed to be done.  And unlike the risk of sticky, oily, smeary peanut butter, Susan's dose was self-contained (and minuscule).  Eventually, I decided that since school was not in session and knowing that we would exercise tremendous care, we should just go with it.  Perhaps it would even be helpful for the administrators we were meeting with to see what it was like for Susan to take her 30 mg dose of peanut protein... 

We entered the meeting, Susan carrying her peanut dose, and a straw.  We started with introductions.  Susan was her typical quiet and shy self, although at this point we all know she has a voice just waiting to get out.  She opened her peanut dose with her -- blended with Dark Chocolate Tera's Whey powder and milk.  As we explained that she was taking her dose, she added that she would have to "slurp" when she was done to be sure she got it all.  We all laughed, and with that, I started to relax.

As we talked, it quickly became apparent that the people in the room were prepared.  They had read the e-mails I sent, and they had checked out my blog (which really has become the best way to get a sense of what the clinical trial has been like for Susan).  I was beyond impressed by their preparation, and I started to feel like...just would be..."okay."  Whatever that meant.  I liked that the administrators in the room had clearly prepared for our meeting.  They had read the e-mails I sent providing an overview of Susan's food allergies, and they were prepared with questions and ideas.  They had even tweaked Susan's schedule a bit in advance of the meeting...

I felt myself relax.  If understanding is the key to management of food allergies, we were off to a good start.  While most of the people at the table did not know Susan, they had taken the time to learn about her.  I felt like we were going to work together to make a plan.  We were a team.

The answer to the question that kept me awake hours this summer?
(When to dose?)
At 7:30 am.

With this plan, Susan will be able to take her dose at approximately the same time every day (with a slight exception on the days that she goes to the Clinical Research Unit for updoses).

With this plan, Susan will be able to skate from 6:00 am - 7:30 am, and then take her peanut dose.

With this plan, Susan will miss her CAPE (read:  Art, then Music...and should the clinical trial go on that long, STEM and CME) classes and her PE class. 

With this plan, Susan will NOT miss any significant instructional time.  (Nothing against Art, Music or the other classes...and no harm to PE, which IS a key component of her Dual Language Immersion Program as it is conducted entirely in Spanish...)  She will NOT miss lunch (as painful as it was at times last year, I still believe it is a key part of the day in middle school -- at least from a social perspective), and we will NOT have to constantly, every day figure out how and when she will take her dose -- it will be neatly scheduled as early as is reasonable in her day...and this plan should keep it from completely taking over her day...

I have been told (by people I am sure are well-meaning) that there is simply no way Susan can miss PE, as it is a state requirement.  I have been told that "no parent in her right mind" would allow her to miss art (the art teacher at our school IS incredible)...

And yet, Susan has to take her peanut dose SOMETIME each day.  And the sometime has to be within 24 hours of the previous dose, plus a maximum of 4 hours.  And, we know that if we can maintain a 24-hour interval it is ideal.   So, while there are those I've encountered (far more than I would have expected) who DO NOT see this as such a good plan, those involved -- Susan, us, the administrators -- all see it as the best possible option.

In a matter of minutes, really, the biggest, most difficult part of the revisions required in Susan's 504 Plan were done.  Phew.

(We also scheduled a follow-up meeting for the week after Susan's rapid desensitization, as everyone in the room recognized that however good our plan might be, it might need some revisions then...

And as much as I wanted to be able to revisit some of the parts of the 504 Plan we never really loved last year, I knew we could not -- for we agreed when we began the clinical trial that we would not change the management of Susan's food allergies in any way.  As we were wrapping up our meeting, I kindly and ever-so-carefully let it be known that it is my hope (my plan, even if the clinical trial does not result in Susan needing fewer accommodations) that we can revisit certain components of her 504 Plan (read:  the lunchroom...)

Friday, August 15, 2014


I have a sixth sense.
I don't mean this in a psychic sort of is just something that kicks in for me as a mom.
A friend of mine calls it a "momsense."

Last year, when four of my just nine-year-old son's (permanent) teeth were shattered during a soccer game, I KNEW the minute he hit the ground that something was not right.  And the moment I heard his keening wail, it was confirmed.

I don't think I am unique in this "sense" I developed after my children were born.
I suspect most -- if not all -- parents reading this will know exactly what I am talking about.

So, when my cell phone rang shortly after 9:00 pm on Friday night (about 5 hours after we dropped Susan off at Lydia's house)...and even though we were in the middle of nowhere and I had such poor cell reception that my phone did not register the number (even though ALL of Lydia's family's numbers were pre-programmed into my phone), I just knew -- sensed -- that Lydia's mom would be on the other end. 

And of course, I was right.

As I was answering my phone, I calculated how much time had elapsed since Susan's peanut dose...more than 9 hours...

When I picked up my phone, in a jumble of words Lydia's mother rushed to explain that Susan was "fine," but...and in that moment I felt trapped -- too far away to be of any good...and I wondered why in the world I had ever agreed to (devised? supported?) such a plan...Susan had vomited (suddenly, as with all of her delayed reactions) while playing on the Slip-N-Slide.

I have no words for how I felt when I heard that.
I realized in a moment that it was about way more than whether or not I trusted this family, these other people who were not me, to care for Susan.  It was about the fact that I wanted it to be me. 

I didn't want Susan feeling unwell with someone else.
I didn't want someone having to deal with Susan's vomit (even thought I knew full well Lydia's mother was NOT vomit-adverse, like me...).
As her mom, I wanted to be there with her.

As Lydia's mom and I talked, it quickly became clear that she really did have everything under control.

Dr. R., who was the on-call physician from the clinical trial was on the other line (Lydia's mother had had it out with the phone company when mid-week their home phone line went out.  She wanted to ensure she had two functioning lines just in case something like this happened.  I must say -- I appreciated her diligence, but I thought it would be unnecessary). 

I talked to Susan while Lydia's mother talked to Dr. R.
Then I talked to Lydia's mother while Dr. R. talked to Susan.

As much as I felt as though I was intolerably far away (as I squirmed in the car), wishing for a different scenario, I also started to feel like things really were fine. 

Susan had an episode of vomiting.
It was over, done.
She was snuggled up in a blanket on a comfortable chair.
She was in good hands and even though she had not felt well, she was clearly still happy to be with Lydia's family.

I realized in a flash that this was exactly why making the plan for Susan to visit Lydia's family had been so important. 

At least for now, Susan was going to have periods of time where she did not feel well.
But she wanted to be a normal kid -- just like everyone else. 

We have spent much of Susan's lifetime working to shift boundaries and to negotiate accommodations that allow her to be more similar to her peers.  We have taken on the school district, our community, our friends and even our family to ensure that Susan can navigate life as safely and with as few restrictions as possible.  We have lost friends along our journey...and seen our community divided over peanut butter.

And I realized, as we drove North through the darkness, away from Susan, away from Lydia's house, that helpless as I felt, this was still exactly what Susan needed. 

My husband and I sat quietly in the dark as he drove.

Breaking the silence, I reminded him that there are more lessons from this clinical trial than we could possibly have imagined...

...and that while many years ago our advocacy for Susan narrowed our community, the clinical trial has -- surprisingly -- widened our circle.