(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 desire...to 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: "Suze...how'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.
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.
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...