Gratitude

Themed cookies to celebrate
their first baseball game

This has been a tough month (unrelated to A&A and their journey), so the continued hope that this clinical trial and the related research brings into my family’s life has been especially gratifying. One source of joy was being in New York last month at FARE’s annual spring luncheon, where Dr. Nadeau spoke and two wonderful women were honored who have done so much to further the cause of food allergy awareness and support the research needs. Being in a packed room of parents of children with food allergies, medical professionals and supportive friends and community leaders was amazing. To those of you who I met there and who shared your stories and challenges with me – thank you. The need for more research, more clinical trials, and eventually, treatment has never been more needed, and your stories underscore that. To those who told me that reading this little ‘ol blog gave you hope, I am humbled. Hats off to FARE for raising more than a million dollars related to that luncheon, as every dollar is needed to give families, doctors and schools the information they need when they need it,  and to continue supporting groundbreaking research like Dr. Nadeau’s.

Speaking of, I felt fortunate to celebrate the creation of an endowed faculty position for Dr. Nadeau at Stanford to help ensure that she and her amazing team can continue to do research toward treatment of food allergies. Knowing that she can continue doing her work there is reassuring and critical for this field to advance quickly, and we are so thrilled and filled with hope for the better future that she will help create.

With the boys, all continues to progress smoothly. They take their daily dose without so much as an argument (Orr has perfected fudge-like dose brownies that they love), and continue to explore and enjoy the world around them without fear. I smiled watching Aviv give his friend a Reese’s Peanut Butter Cup the other day, after his friend was jealous of the one in Aviv’s dose. Jealous of Aviv’s dose! Just writing that makes me giggle. The ‘firsts’ also continue… enjoying chocolate-dipped ice cream cones brought smiles as big to A&A’s faces eating the cones, as it did to mine watching them take in the thought of it, then dig in. 

We also had a turning point purchase (that follows in the footsteps of such things as buying Nutella, Bamba, Reese’s products and ordering from nuts.com) this week when we bought an item that used to make me shake as I walked past it in the store, as if it would somehow jump out of its box and contaminate us. Nut-Thins. Tasty little gluten-free crackers that look harmless but were made out of the enemy: nut flours. Who would have thought of those entering our house? Not me. Yet here they are, now.

More gratifying to me than the firsts, actually, are the things that have gone from being novel to regular occurrences. Drop-off birthday parties, eating at buffets, participating in potlucks at school, going to Thai restaurants, enjoying carnival rides and chess tournaments… these are all things that we went from not being able to do, to reveling in them for the first time, to now incorporating into our routines. I still quietly appreciate how far we’ve come in each of those moments, but the boys have come to expect them now, and aren’t as conscious of the magnitude of the miracle. I make a point of reminding them of their hard work that enabled them to do these things, but they seem quite nonchalant about them.

We head back down to SAFAR this Tuesday for more testing. (Just in time, too. We have to stop the boys’ antihistamines 72 hours before testing, and Aviv always starts to turn into a puffy, congested, crankypants the day before testing, as all traces of the medicine have left his body. He’ll stay that way until right after the testing ends, when he can pop a Zyrtec and resume normalcy.) At this point, we go every six weeks in order to keep a close eye on the nuts that have gone negative and to see how the fine tuning of the daily amount affects their bodies’ reactions. We’re hopeful that the changes we made last time (upping Aviv’s cashew dose to 2 grams and upping both boys’ pecan dose to 7/day) will have brought cashew and pistachio back down to negative, and kept pecan at bay. Fingers crossed. There is also a relatively new tradition at the clinic, where there is a notebook for kids to leave messages for other kids going through the trials. I asked the boys to think about what messages they might leave, and will let them have the last word for today…

From Ari: “It will get easier as you move through the trial. It’s a whole new life now. You get to go to different bakeries and restaurants, and you don’t have to worry about a thing!”

From Aviv: “It’s been an amazing journey. We’ve traveled from Israel to California to Costco to Safeway...  All because of Dr. Nadeau!”

Indeed.

Play ball!

Go giants!

Last Wednesday brought important information and new milestones.

First, the new first: a real baseball game! No longer fearful of peanuts on the ground, the boys watched their home team play live and enjoyed their first ballpark food. Neither wanted to eat the traditional peanuts, and Ari expressed surprise that “people weren’t throwing peanuts around” as he had imagined, but it was a good experience.

Second, their recent testing appointment. It was mixed from an emotional standpoint, but very rich from an information standpoint. On the plus side, their skin tests showed that they both continue to be negative to walnuts, Aviv continues to be negative to hazelnut, and the upping of the pecan dose for both boys to 7 pecans/day (1050mg, which we have been doing for the past 6 weeks) seemed to have had the desired effect, which is to decrease the redness we had seen during the skin tests in their last two appointments back to a very, very small showing. This seems to indicate that while a daily low number of nuts may not be enough to maintain the body’s negative status for some nuts and some kids, it appears that modifying the amount can realign the body fairly quickly. Mind you, this is just the experience of two kids; not enough data exists yet to make generalizations, but that’s what we saw for A&A with pecan.

Ari's back: some redness for hazelnut 2nd from the top right; positive control on the upper right.
Walnut (top left): nothing! Pecan (bottom right): tiny mark.

Aviv's cashew test is the middle of the bottom row,
almost the same size as the positive control (upper left).
No indication for walnut (top right); tiny mark for pecan (bottom right).

On the down side, Aviv’s skin test for cashew was positive, with a related small amount of redness for pistachio (the two nuts are genetically very similar). We’re going to increase his cashew dose from 2 nuts to a full 2 grams of cashew in an attempt to bring it & the pistachio back down. Luckily, since Aviv’s peanut dose is currently down to 2 grams/day (due to the onset of the pollen season causing those with environmental allergies to decrease their daily dose to avoid overtaxing their bodies), he can absorb this increase without feeling like his dose is unmanageable.  What we are taking from this turn of events is that there is no magic number yet that has emerged as being THE number of nuts that will maintain the body’s desensitization (or in this case, its having gone negative) to a nut. We knew when we dropped to 2 nuts per day of the ones the boys had gone negative to that there was a chance that that wasn’t enough. Heck, Aviv was the first to enter that holy grail of ‘going negative’, and we knew that he couldn’t sustain the full maintenance dose anyway, so we were all willing to take the chance in the name of research. Monitoring their blood and skin tests closely every 6 weeks (in addition to our own daily observations and detailed daily diaries that we keep) has enabled the SAFAR team to stay on top of small changes, and quickly tweak the daily dose accordingly. I’m not as disappointed by the reoccurrence of the cashew skin test reaction as you might think, as I feel comforted by the quick and affirmative response that the increase in pecans had. We’ll see in 6 weeks what the even bigger increase in cashews bring. (Not as dramatic, but still worth noting is that Aviv held steady with peanut, and Ari did the same with hazelnut, meaning that their skin test results haven’t changed at all; both continue to show quite small wheals.) Stay tuned.

Typical scene during our testing appointments; waiting for the numbing cream 
to take effect before beginning the blood work.

Boys waiting for their skin tests to finish.

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We decided to get away this weekend, so took a quick trip to Half Moon Bay. I continue to relish in the freedom the boys feel to eat anything they see, to eagerly approach a buffet (well, Ari more than Aviv, but that’s just due to eating preferences and not allergies), to enjoy s’mores around a campfire, and to be able to eat their dose easily on the go. It’s still a decent amount of work to prepare the boys’ dose and package it each day, but it seems like just part of daily life now, like packing lunches or checking homework.

This is what the daily dose prep ritual looks like:
all items spread out for packaging into small
containers with labels.

We’ve come so far from the pre-trial days, and even the height of the dose escalation days just half a year ago, when just the thought of the mound of nuts that needed to be ingested made us all cringe. I was reminded this week of the anxiety that occurred when we went to Disneyland last year, when Aviv refused to eat his dose and we stood crying, shouting, begging and ultimately calling Tina (the always amazing, heart and soul of the SAFAR staff) to bring us back from the edge. Patiently she talked with Aviv to convince him to eat his dose, when not even the threat of not entering Disneyland could do it. To go from severe allergies, to fights over eating huge amounts of nuts, to easy breezy trips away with hardly a care as to food or dose, in a little over a year…. That’s truly amazing. I can’t think of a better way to celebrate these miraculous advances that Dr. Nadeau and other leading researchers are making then by attending the annual FARE luncheon this Wednesday. (If you were familiar with FAAN or FAI previously, FARE is the new, single voice of the food allergy research and education movement that emerged when those two organizations combined.) I’ll head to New York to hear Dr. Nadeau speak and to honor two wonderful women who have put in countless hours to make sure that people have the information they need to protect their families, that legislation to properly safeguard our kids exists, and that monies are raised to support critical research and education efforts. I am so grateful for all that they have done… I remember when we first got our diagnosis with Ari, and how surreal and alienating it all felt. I pored over the useful information on FAAN's website to help me get my arms around our new life and figure out how to function within it, and ultimately to manage it. Now, as food allergy parents, it’s not just about managing our restriction and anxiety-filled lives; it’s about moving toward and enabling a different and better life. I am so excited for Wednesday when I will be surrounded by almost 700 people who also care deeply about food allergies to celebrate the efforts of Dr. Nadeau, the amazing parents/advocates/leaders who enabled this research, and the results that we live and breathe each day. Can’t wait!

Who's the luckiest?

A few snapshots from the week that represent the surreal reality that we're in...

Aviv had his annual well kid visit this week, and the question came up around updating his medical history. "Allergic to peanuts and tree nuts", our pediatricain read from Aviv's chart, and looked at me with a question mark. Honestly, I didn't know how to respond. We don't fit squarely in the 'allergic' or 'not allergic' box anymore. We agreed that neither accurately reflected our reality, so agreed to go with a hybrid/custom response of listing the nut allergies with a notation that Aviv has been desensitized and is currently in a clinical trial. OK, that worked for that situation, but what about others? For example, how should we update our food allergy action plans? All kids with food allergies should have one with clear instructions regarding what to do in certain scenarios (accidental ingestion; upon certain symptoms; etc.). We've had many of these plans in the past 6 years, nicely laminated with a current photo and kept in their classrooms, camp areas, etc., and it was always clear to me how to fill it out. Now it isn't. We'll look to the SAFAR team to help us with this next step as we navigate being somewhere between identifying as "allergic" and "not".

The other moment of wonder came after Orr returned recently from a trip to Israel with a suitcase full of edible treats. Among the treasures was Bamba - a peanuty, puff-like snack. (Think Cheetos but replace the day-glow orange powder with peanut powder.) Bamba on its own is a fascinating story for the food allergy world. Like in the US (where the majority of babies eat Cheerios as their first finger food), the vast majority of Israeli children start with Bamba as their first finger food as it dissolves in the mouth. Why is that fascinating? Because almost every child in Israel under the age of one starts out eating Bamba, and their rate of peanut allergies is extremely low; in fact, Israeli children eating Bamba in their first year of life were found to be 10 times less likely to develop a peanut allergy than their UK counterparts who didn't ingest peanuts. The impact of this country-wide body of data helped inform the American Academy of Pedatric's recent (January 2013) recommendations on infant feeding practices, namely that delaying introduction of foods like wheat, cow's milk dairy, eggs, fish and nuts may actually result in an increased risk of food allergy or eczema, and the early introduction of allergenic foods may prevent food allergy in infants/children.

Back to our lives: needless to say, A&A have never had Bamba during any of their trips to Israel. But they do love junk food, so as soon as Orr pulled it out, they wanted to have it. After summer trips filled with steering Aviv away from it, he now not only got to eat it, but used it to fulfill his peanut dose requirement for the day! Surreal, all around.

Two big things are coming up for us next week...

We head back to the SAFAR team on Wednesday for routine skin and blood tests, with our fingers crossed that the pecan & peanut skin test results either hold tight from last time or improve. We've upped both boys' daily pecan dose to 7/day, hoping that that helps to keep them negative, and Aviv has cut his daily peanut maintenance in half during this environmental allergy season. I'm a bit anxious, but we'll see on Wednesday where we're at.

After their appointment, the boys are going to experience another first: a major league baseball game! They've never been to a ballpark, thanks to the down home, American tradition of eating and throwing peanut shells on the ground at games. Previously, the mere thought of trying to protect them in that type of environment was enough to send our heads spinning. Now, we're giving it a whirl. When we told the boys that they were going to their first Giants game, they were initially very excited. Then Aviv got quiet, looked down, and nervously said, "But there are peanuts there, all over the ground, and I'm still allergic to peanuts." I held him and reminded him that he can be around peanuts now, and that, in fact, he eats them everyday. I reassured him that he is desensitized to peanuts and that he'd be fine there; that the peanuts wouldn't hurt him. He stayed curled in my lap for a few seconds absorbing that information, and then he must have decided to believe me, as he jumped up and ran right back to what he was doing, as if nothing had just occurred. I am always in awe of kids' resilience. As adults, we may be bruised and (virtually) bleeding in the wake of some type of upheaval (emotional, verbal, physical) that spewed from our kids, but they bounce right back to what they're doing. There's definitely a lesson in there for us parents - if only we weren't so bruised and tired to find it!.

As Aviv got the last word in my last post, Ari gets it today. He brought home a workbook from school that has pages preprinted with the first half of a sentence that the kids are supposed to finish themselves. I flipped through it and found an entry from January 7th of this year, where he was asked to finish the sentence "My luckiest day...". Ari wrote (spelling corrected):

"My luckiest day... is when I started the trial. It changed my life. Now I can eat nuts! Now I can eat anything I want!" 

In this crazy, materialistic, entitled, instant gratification world we live in, to have two kids who understand and appreciate how lucky they are to be a part of this groundbreaking research - I think that I am actually the lucky one.

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

Bump in the road

I intentionally didn’t write last night, as I was trying to get my arms around the panic that started to well up inside of me. A full night’s sleep (we all collapsed upon our return home) and 24 hours of perspective helped, though I still have residual anxiety…

Yesterday we went to SAFAR for tests, 6 weeks after our last appointment. At this stage in the trial, we would normally return every 3 months, but at our last visit in January, Aviv’s skin test for pecan had some redness. He had previously tested negative to pecan, so a little redness – not necessarily a full ‘wheal’ or welt, but redness - was curious. We decided to keep a close eye on it by returning in 6 weeks. Despite the previous negative test, both boys have been including 3 pecans in their daily dose just in case. Remember, this is completely new territory here… no one had gone negative prior to this, so the data for what to do when it occurs just doesn’t exist.

Back to yesterday… I gave blood (for research purposes), both boys gave blood (with some yelling and screaming), and then the skin tests began. The cashew, pistachio, walnut and hazelnut for Aviv continued to show nothing – totally negative! Same for Ari with walnut. But the pecan on both boys (along with peanut, and hazelnut, respectively, which they haven’t yet gone negative for) appeared red, and more so than the redness we saw 6 weeks ago. What does that mean? I wish I knew. No one knows. Was it just redness (which can result from the mere prick during the skin test, and may not indicate any problems), or an actual wheal? As we learned early on in this journey, that's what it means to be in a trial... they're trying out different hypothesis and approaches, and we're along for the ride. There’s no definitive answer to my many questions of what to do next, what might help, could they lose their desensitization, is everything ok… As Dr. Nadeau reminded us today, we are on the edge of the research on this topic, and from what our medical team understands and knows from other trials, this should work. We’ve decided to increase their pecan intake to 7/day and come back in 6 weeks for more tests, but truth be told, my stomach is in knots. I know that both boys have been fully desensitized, and I know how much freer our lives are now. I also know that redness and possible wheals on skin tests where there previously were none isn’t what we want. Why the change? Do they need to have more pecans per day to keep up the status? Does this mean that their bodies can/will regress? The answers to these questions are not known, and that absence is making me crazy right now. Perhaps this isn’t a big deal, but we just don’t know. We’ve been so, so lucky that things have progressed smoothly until this point, and felt the miracle of the boys going negative to so many of their nuts so quickly – that wasn’t expected to happen (if it was to happen at all) for another year or two.  We’re hoping that this is just a minor detour… that we just need to up the pecan dose to get things back to heading the right direction, and be patient. Unfortunately, I’m not great at being patient, especially when the stakes are so high.

Pecan is on the bottom left for Ari

Pecan is on the upper right for Aviv

We’ve decided not to share with the boys what’s going on, as there are so many unknowns right now and we don’t want to worry them unnecessarily, especially when we don’t really know if this is something to be worried about. They are so proud of themselves for all the hard work they’ve put in and the amazing results they’ve achieved, and we don’t want to squash their excitement and pride.

Perspective is an interesting thing… Had the boys not gone negative over the past few months, we would have been over the moon about yesterday’s skin test results for pecan as they were so mild. We would have continued to be thrilled by the tangible results we experience every day, that is, that they eat these nuts with no reaction whatsoever. But now that we’ve gone further, it’s hard to feel like we might be slipping backwards. So I'm filled with hopes...  I’m hoping that this is just a minor bump in the road; that giving them more nuts will go smoothly so that we’re not back into the world of fighting over dose; that Orr & I do our best to bottle up our own unease so the boys don’t feel it; that in six weeks the skin tests show less-to-no redness for pecan; and that we find that we worried for nothing. Those are my hopes for tonight.

All the magic of the magic kingdom

What an amazing trip! Three full days in Disneyworld and ½ day at Kennedy Space Center, and the whole trip was smooth as can be.  Due to some creative travel logistics, Orr & I each had to do one cross-country flight with the boys on our own (outnumbered 2:1!), something that we never could have done before… we barely were able to juggle the pre-boarding machinations of seat decontamination with two adults previously; certainly impossible with one. This time, though, everything was a breeze. Flights were relaxing. Eating anything, anywhere was freeing. Packing small, easy-to-ingest dose was simple. Watching Aviv touch EVERY single pole, railing, door, handle, etc. that he could find grossed me out from a germ-standpoint, but didn’t panic me. And we are probably the only people to ever have derived pleasure from standing in line at Disneyworld, but we did. Orr and I both smiled and actually enjoyed the fact that we could stand in line with everyone else, rather than need an accommodation pass to avoid crowded areas for fear of cross-contamination. Just to truly show the universe that we meant business, the boys ate their dose while we stood in line; a double miracle. It felt so good to actually enjoy the activities and adventure of this vacation, and to know that we could not have done this prior to the boys being desensitized.

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We had the amazing opportunity this week to meet some of  the other families who are in Dr. Nadeau’s studies, and I was so moved by the number of people whose lives are being made better each day by Dr. Nadeau’s tireless work. Families who are driving 4 hours each way, every 2 weeks, for a three year period in order to change their lives… families whose kids are pioneers in the peanut patch trial – instead of ingestion of the peanut for the first period of the trial, they wear a sticker/patch that releases the peanut protein into their system…  families who previously felt hopeless, thinking that there was no other option but avoidance (which, for those with airborne allergies, is extraordinarily hard to manage), who now are on the path to desensitization. I was humbled by some who told me that reading A&A’s story is what gave them the hope and courage to contact SAFAR, and now their children are in a trial and seeing progress.  I am so, so thrilled for them, and hope for more to follow.

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We head back to SAFAR on Tuesday for the boys’ next check-up and tests, hoping that the nuts that went negative continue to stay negative, and hoping that the last remaining ones (peanut for Aviv, and hazelnut for Ari) also turn that corner. I’ll also be giving blood this time, as Orr & I are periodically asked to give samples for various related research projects that are being done to understand more about the genetic links for allergies.  I have dealt with a needle phobia my whole life, but when I’m with my kids, and either I or they are giving blood for purposes of finding answers to cure food allergies, I find myself strong and happy to do it. Tuesday, here we come!