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!

The firsts continue…

All continues to go well here, with both boys eating their (now much smaller) daily dose without incident. Aviv is actually excited to eat 2 Reese’s Peanut Butter Cups (in addition to his cookie of other nuts), and Ari is enjoying the new concoction that Orr made that is jam between two layers of dose brownie. (Yes, Orr is still creating new dose desserts for them on a regular basis.) Both boys generally finish by the time they come home from school, and are THRILLED to eat regular lunches like the other kids. We’re even considering signing up for the hot lunch program at school… something that was so off limits previously that I hadn’t even considered it until Aviv asked about it recently. The boys’ bodies have far outpaced our minds in coming to terms with our new reality, and we often don’t think about doing certain ‘normal’ things (ordering take-out, trying new restaurants, signing up for school lunch, etc.) without prodding. We’ll get there, but we’re not quite there yet.

So a year after beginning this trial, we are still embarking upon firsts… Ari entered his first chess tournament last week, and as I watched him play, in a room of 200 other kids, with everyone touching all of the chess pieces and eating between rounds, I took a moment to appreciate how miraculous it was that he could be there. The machinations that would have been needed to enable him to play (before this trial) would have been so onerous (separate pieces for Ari, warning the other child about touching his, carefully wiping down the mats and tables between rounds, etc.) that he likely would not have been able to compete. There he was, though, enjoying himself and learning new lessons of both gracefully winning and losing.

Other exciting news is that we are going to Disneyworld for the first time! We never would have taken that on when the boys were so allergic, but now we feel confident and excited. We’ll travel with our dose, of course, and some snacks, but can feel free – and it does feel freeing – to eat whatever and wherever we want. Now that these types of adventures are safely available to the boys, we want to experience them, so we’re going. When we went to Disneyland last year, we were still in the painful throes of the large dose (with daily fights and tears, for us and the kids!) and Aviv was sick on top of that, so it was a tough trip. Fingers crossed for a trip of smooth flights, new explorations, easy eating, lots of fun and all that the magic kingdom has to offer.