Of freedom and miracles

Making charoset

The story of Passover has felt very personal for me this year. It was a year ago this month that we began the dosing in this trial. Last March, Ari & Aviv began eating their most feared food under our (and SAFAR’s) watchful eyes. So it was with beaming pride a few days ago that, as the boys and I made charoset (a Passover food traditionally made from apples, raisins, honey, cinnamon and nuts), I asked them if we should include nuts in it this year for the first time because we can. Their response was a resounding “NO! Nuts are gross!”, causing me to chuckle. Passover is the story of freedom and miracles, after all, and both our ability as a family to go anywhere and eat anything, as well as the power and luxury to choose not to, represent a new freedom and miracle for our family.

As we read the story of Passover at our Seders this year, I couldn’t help but be inspired by the faith that Moses and Nachshon had when faced with the unknown. They were told that they were going to a better place and that it would be hard along the way, and to just trust and do it; they didn’t know what was in store, what each day would bring, or how long it would take. Our journey in this trial has required tremendous faith as well, especially in the moments that felt most insurmountable (such as when Aviv went on a hunger strike rather than eat his dose of 106 nuts per day last August), as well as when changes to the process made us feel like we were holding hands, jumping and trusting (without years of conclusive data to reference), such as we’ve done over the past few months in significantly decreasing the boys’ dose after they’d gone negative to certain nuts. We don’t know how decreasing their dose to minimal amounts will impact their overall desensitization or their having gone negative, but we have faith and we do it. So when Dr. Nadeau told us a few weeks ago that Aviv (and other trial participants who have environmental allergies) need to cut their dose in half – not because of positive news (such as a negative skin test), but because the pollen season is strong now with the start of spring, which resulted last year in an increase in reactions for some participants - we drew on our faith in her to comply. Despite reassurances to the contrary, we can’t help but feel it as a bit of a setback. We have been told that this is a temporary change in dosing (until pollen season dies down), but as we are reminded of frequently, there are no clear roadmaps or guarantees in a clinical trial. Like Nachshon entering the Red Sea to lead the Israelites through it despite the water not parting until he was standing in it up to his neck, we believe and we continue moving forward, even as things may seem scary around us. I hope that doesn’t sound too dramatic. It doesn’t feel out of proportion to me, living this reality of fears, hopes, ups and downs, and counting on faith to help ensure that the hopes and amazing results continue.

A&A holding the NY Times article, and
celebrating with a previously-forbidden pastry.

Speaking of living this reality, we are grateful that the exposure that has come from the New York Times article (& the tremendous press coverage that has followed) has elevated the conversation, provided a glimpse into the life of families with severe allergies, and shined a light on the importance of more research. Ari & Aviv even asked for their own copies of the article so that they could proudly share it with their friends and classmates. I find myself talking about food allergies and the amazing hope that these research trials bring almost daily.  I’ve had the pleasure of meeting with other food allergy moms and their kids in recent weeks, and I am so in awe of them all. Hearing their stories of struggles with their schools (having to decide whether to home school, fight for a classroom aide or brave it), to finding ways to allow their kids to go on school sleep away field trips (I cannot even imagine that level of anxiety), to not being able to leave a child’s side at sports practice for fear of the next reaction. These trials bring them all hope that their lives won’t always be that way, and we can certainly relate.

Two other moments from the past few weeks that made me reflect on our journey…

Another Orr cake masterpiece

Aviv had his 6^th birthday a week ago, and Orr spent weeks planning for and then creating an amazing custom cake for his birthday, as he has for every birthday of Ari and Aviv over the past 6 years. Orr’s cakes are amazing creations made with love through hours upon hours of work. It started because we didn’t have a choice… there was nowhere we could buy a safe birthday cake, as there are no nut-free bakeries where we live, and he wanted them to be excited by their birthday treat. This year, we had a choice. We could buy any cake we wanted, and we discussed doing so. Again, the boys jumped in with a resounding No! – as did Orr – because these acts of edible love are such a part of our lives now that even though we can choose another path, we don’t want to. Some habits are hard to break.

A&A's matching Medic-ID bracelets inscribed
"Severe Nut Allergy - use EPI-Pen"

The second moment of pause came when I realized that our EPI-pens were expiring, and that I would need to replace them. They’ve expired and we’ve replaced them every year for six years, but this year felt different because I didn’t think I’d be doing it again. Both boys moved up from EPI Jr’s to the regular/adult dose of epinephrine this time around, and I’ll admit to feeling a twinge of disappointment that we need to still have them. Maybe I was unrealistically optimistic. We’ve been so lucky to have not had any reactions since the early days of the trial, so between that and watching the boys eat nuts each day, I guess I harbored the hope that we would not need to shlep them around anymore. To be honest, it feels a bit confusing sometimes to be carrying EPI’s. I know intellectually, of course, that we can’t be complacent; that we need to continue to be vigilant of a possible reaction, especially now in this season of heavy pollen and hotter days (both of which can make a reaction more likely and/or stronger), and we are. We don’t leave home without the EPI’s, an EPI set is still in each of their classrooms, they each still wear their Medic-ID bracelets pronouncing their allergy, and I still jump if I hear one of them wheeze… yet I still felt a brief moment of sadness when I placed the call to our doctor asking for a prescription for 6 new sets of EPI pens. The reality of being in a trial is that results are not guaranteed and things change, so having faith in the unknowns and the big picture is critical. Luckily, Dr. Nadeau makes it easy to have faith in her, and that faith has brought us such freedom.

As is often the case in our lives, Aviv will have the last word. During a bedtime conversation recently, Aviv told me about a kid in his class who he thinks is the smartest.

Me: "What about you? I think you're pretty smart..."

Aviv: "No. He is the smartest. I'm the luckiest."

Me: "How come you're the luckiest?"

Aviv: "I'm the luckiest because I have Dr. Nadeau helping me!"

A true Passover miracle. I'll raise a spoonful of charoset (with or without nuts) to that.

Thank you, New York Times!

I’m thrilled to share that this week’s New York Times Magazine features the Stanford Alliance for Food Allergy Research (SAFAR) as its cover story, providing much needed visibility and insight into the amazing work that Dr. Nadeau is tirelessly doing, and the lives - including ours - that she is helping to change. Coming together for this story photo with many of the trailblazing children whose lives have been improved through Dr. Nadeau's research was awe inspiring, knowing how different all of their lives were a few years ago.

To those of you who have food allergic children, I know you’re going to cry while reading the article, as I did, because it is so real and hits so close to home, and because it so eloquently captures the emotions of fear (and now hope!) that we’ve all had.  As you read and well up, know that I feel your tears, and I know your moments… the moments of turning away so that your child doesn’t see you cry after you’ve narrowly averted a near fatal encounter with a cross-contaminated bite of food… the moments where you are mama grizzly, standing up for your child’s right to a safe environment where he can read a library book and go to school without fear… the moments of driving at breakneck speed to get to the hospital because your child is having a reaction. I know those moments because I’ve lived them too, and though the rawness of the accompanying emotions are a bit more distant for me, this article brought them all back. What makes me grateful and hopeful beyond words is that Dr. Nadeau’s work is getting us all closer to a time where those emotions can be distant for all of us.

A&A with Dr. Nadeau and photographer Art Streiber at the photo shoot