Firsts and more firsts!

So if 11 days ago I wrote that our minds had stretched themselves to the point of hurting since the boys were cleared to eat foods that might be cross-contaminated, I can now report that our tummies have followed suit. We have spent the past two weeks eating ourselves silly around Marin, exploring restaurants, store aisles and foods, and engaging in behaviors that seem remarkably unexciting, unless, of course, they have been off limits to you for years.

The boys had many firsts (and many items were checked off on the Wishing Wall!) over the past 2 weeks: first trip to Jamba Juice, first Zbar, pizza places, ice cream parlors, bakeries and more bakeries, petit fours, éclairs, samples in Costco, fresh breads, pastries, pesto, a sandwich from a food vendor… I wasn’t kidding when I said our tummies hurt! In addition to enjoying watching the boys eat and experience new foods, it was the little things that we were finally able to do. Orr has been out of town for the past week, and I decided to take the boys all over this weekend… for smoothies, to an Earth Day festival, to a store to get popsicles, to parks, exploring at Costco, and to a pizza place with friends. Normally, even with Orr, we wouldn’t have included those food-related stops, as the locations didn’t have safe food for the boys. We would have gone to the festival and parks, but I would have been nervous the whole time about what the boys were touching that could have nut oil residue on top. We certainly couldn’t have eaten any of the food offered at the festival – that was out of the question – but even the non-food activities there would have been anxiety-producing, enough so that I probably wouldn’t have done it solo... too many things to watch out for/anticipate. Fast forward, however, to our new world where cross-contamination is not a risk anymore. I took them to all of those places, let them eat what they wanted, even ordered a sandwich from a food vendor at the festival (Finally! Freedom from the cooler bag!) and let the boys run free to touch whatever they wanted in the booths without chasing them down with wipes. It was amazing. I was truly overwhelmed at the ease of it all and the enjoyment of the day and the moments in ways I hadn’t felt before.

We went to Costco and spent several hours walking each aisle, talking about the foods and brands that they’ve never had, but can now. They wanted to learn about different types of nuts and brands, asked questions about what things taste like, and then savored the samples that were previously coveted but forbidden. We went to bakeries and food stores and did the same thing – looking at and talking a lot about food (and then eating new things!). This is a process to adapt to, not just physically, but mentally. When they picked out their MUCH desired Zbars (I guess because they see their friends with them? I’m not sure why it was such a hot item, but it was high on the Wishing Wall…), they both held them and looked at them for a moment. 
Aviv then asked if he could eat it, ripped open the package, and began devouring it. Ari opened his and stared at it for a minute before asking me, quietly, if I was sure it was safe. I told him it was, but that we could read the ingredients together just to make sure. He listened to the ingredients intently, heard me confirm that even though it was made on equipment with nuts, because he has been so brave and followed all of the rules of the study so well, his body is now strong enough to handle it, and it’s now safe for him. I keep reinforcing that it’s their bravery and diligence that is enabling their bodies to grow strong. I know that the nightly doses aren’t fun for them. Despite the fact that they are taking their nightly nuts in chocolate pudding, apple sauce and/or a big chock-full-o-nuts cupcake, the sheer volume makes it not exactly fun or tasty, and I want for them to have a clear connection in their minds of the benefit that they get from this effort, as they have a lifetime ahead of them of daily doses in order to maintain their bodies’ immunity.

I also had a few moments of my own when I was struck by how our life had changed over the past 2 weeks. One was the arrival of our first nuts.com order… there was something just so unbelievable about it that we all looked at the box and laughed for a while before opening it. Then during a meeting at work, I had a bite of a peanut butter cookie and then instinctively assumed my usual position after such a contaminating event of making sure that my hands don’t touch my pen or phone until I have a chance to wash them off… until I realized that it was ok… this level of cross-contamination was fine… it won’t hurt my kids. My head spun a bit as I had to almost force myself to pick up my pen without waiting to wash my hands. Just as the kids are experiencing new things and re-learning ways of living, we need to re-learn habits as well.

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Tomorrow we head back to Stanford for the next updose – this one to 5800mg! We’re definitely past the point of being able to hide the nuts into a cupcake, so it will be interesting to see the actual number of nuts tomorrow, and more interesting to see how we’re going to get them to eat that many at one sitting each night. As I prepare our bag (with games, medicines and my huge medical file of notes) for tomorrow, I am acutely aware of the huge cloud that has been removed from our sky. As tiring as it was to keep up with 2 active boys as a solo parent for the past week, going out in public with them wasn’t stressful. That, on its own, is a huge change. We thought that the big life change would happen for us when the study ends and the boys graduate from it, but in some ways, crossing the cross-contamination barrier is a bigger milestone. The boys are sharing their good news with everyone who will listen; they are so excited about these new experiences and it feels like such a privilege to watch them revel in it. For us, participating in this study is about what happened this past weekend… it’s about erasing the invisible layer of risk and anxiety that permeates everything we do, to allow us to just live and enjoy our lives. To enjoying every minute!

D-lacious!

Our minds have stretched themselves to the point of hurting over the past 48 hours since the boys were cleared to eat foods that might be cross-contaminated, as realizations of things that are now possible come into focus, one at a time. It’s been interesting to hear from friends and family these past few days regarding what their first “Now you can…!” is, giving us a window into the parts of our lives that they believe was most oppressive or the things that most impacted their lives. For us, we didn’t even think about what we were missing most of the time because we were so used to it, so this has been eye opening. My mom was excited that she can now serve chocolate after meals at her home, and that she can use her favorite Trader Joe’s items when she has us for dinner. (Many of Trader Joe’s items are made in facilities that also process nuts, so were off limits. No more.) Orr was excited that he can finally buy fresh breads for the house, so he went and bought two different, interesting loaves today. We’ve been making our way through them quickly! (For those of you who are thinking, wait, isn’t it still Passover? Yes, it is, but we decided to bring our observance of it to a close early. Not to be over dramatic, but we feel that we are experiencing a “coming out” to freedom of sorts, so this is our Passover observance this year. Next year we will go back to matzah.)

One friend, after hearing our news, pointed out that we can now leave our house on the weekend, for a day of doing whatever one does on the weekend, without having to pack a huge cooler bag full of food. This was one of those things that we never even though about, but – I’ve heard – other people just leave their home when they want to go out, and get food wherever they are. Intriguing. As tempting as it sounds, I’m actually getting a little anxious just writing about the idea of leaving the house so naked, and might have to ease into that one slowly.  Other friends invited us over for lunches or dinners, feeling comfortable now to do so. We are acutely aware of the stress that can come with thinking one wrongly placed spatula could send our kids into anaphylaxis, and we’re just grateful now that the fear is lifting for all of us, and that doors are (literally and figuratively) opening.

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Today the kids were off from school, and Orr decided to take them to a bakery for the first time to let them choose whatever they wanted. (Wishing wall item #2: check!). Sticking close to their food-based personalities, Aviv chose an old, recognizable favorite - blueberry muffin - and Ari chose a chocolate croissant because it sounded interesting. Ari is one of those rare kids that really, really likes foods, and has always been adventurous in that area, eager to try new foods and sample new tastes. (Lucky for him, he has a dad who likes to cook delicious foods…) So for Ari, discovering a new texture, flavor, and food experience is exciting. As Ari savored his croissant, Orr asked him if it was good. Ari replied, “it’s not just good, it’s amazing! I have never had anything like it.” It then occurred to Orr that Ari was right – he never has had anything like it. Of the many delicious treats that Orr bakes, croissants are not one of them, and since the kids have primarily only had baked goods that Orr makes, Ari has never experienced one. Ari sat and ate his croissant quietly, just enjoying the moment and those first bites of flakey, buttery goodness. It’s not often that you get to watch someone truly savor a new experience so completely, and certainly not one that you tend to take for granted, like the existence of a fresh pastry. These are the small things that seem so simple, but run deep. When they were done, Orr bought fresh bread to take home, which Aviv wanted to try. (New forms of carbs available to them? He’s in.) After eating a slice of fresh sourdough polenta bread, spread thick with butter, Aviv commented on how good the bread tasted. (“D-lacious!” is the word he has coined, which is a step up from 'delicious'.) They discussed how bread tastes best in the first few hours after baking, and that all the breads Aviv has eaten previously (with the exception of the weekly chocolate chip Challah that Orr makes) were large-factory breads and not fresh out-of-the-oven breads, because those were the breads that we could be sure were safe. Hopefully those factory days are over and we are off to a fresh (bread) start.

First Wishing Wall item: Done!

“Cookies & cream ice cream, on a cone, with sprinkles on top!” were the sweet words I heard from Ari tonight, as he proudly stood at the counter of our local ice cream store and ordered. Aviv ordered his celebratory ice cream on a cone with snow caps and gummy bears - firsts for both kids who have not been able to order toppings or cones, and only limited ice cream flavors at limited stores. How did this happen?? Hard for us to believe, too...

Today's appointment went very well, which is amazing since the boys had their monthly Xolair shot (painful, even with Buzzy to help), blood tests (done periodically to check to see the changes in the bodies IgE levels and other indicators) and then their updose to 4000mg. It was sweet to watch Aviv (who went first in each of the scary shots/tests, as always) help the nurse with Ari's blood draw, replacing the tubes, carefully observing the process and asking technical questions. Such a contrast to Ari, who doesn't want to see the needle or talk about the procedure. Finally, with kids settled back in to their bed to watch Empire Strikes Back for the millionth time ("Laugh it up, Fuzzball" never gets old...), we talked through the new dosing with the nutritionist. To give this context: 4000mg translates to 4 cashews, 4 hazelnuts, 3.5 peanuts, 2.75 pecans and 1.75 walnuts for Aviv, and 6.5 hazelnuts, 3.75 pecans and 2.25 walnuts for Ari. Per day. For kids who just a few short months ago couldn't be near the stuff. In addition to that being amazing, it's also a little terrifying for us. All of those nuts now live in our house, and we bake them into little (now big) muffins for them to eat as their nightly dose for the next two weeks.

But more surreal than that was the bombshell news from Dr. Nadeau today: we've crossed the cross-contamination barrier! The boys' daily dose is now so high, that cross contamination is no longer a danger. This means that they can eat foods that have been made in a facility (or on equipment) with nuts. They still can't eat actual nuts outside of their nightly dose, but everything else is fair game. Bakeries. Ice cream stores. Fresh breads. Restaurants. People's homes. Any brand. I had to ask Dr. Nadeau several times to explain what that meant, and - just like in the very beginning, where I had trouble believing that we were really admitted to the study, and had to ask her to repeat things in a dumbed down way so that it could soak in for me  - had trouble believing what she was saying. Most of the things on our Wishing Wall are already available? Does not compute. The one limitation right now is that she wants to limit their sampling of this broader world to only when Orr or I are around, as we are trained at this point to recognize even small reactions and handle them (ideally) without need for EPI pens or the ER. So school and any other activities when we aren't around need to remain as is, from a nut-free/protocol standpoint; only if we're with them, can they begin to experience more without worry of cross-contamination. As exciting as this is (and don't get me wrong... this is HUGE), it is going so fast that it will take a while for all of us to truly absorb it mentally and be able to act on all aspects. I thought about going to the grocery store, and realized I'm not even sure which brands I'd want to look at anymore, and am not sure how comfortable I'll really feel bringing them home. Beyond the expanded food options is the critical disappearance of the previously omnipresent risk of invisible dangers. I want to let out a huge sigh of relief, but the sigh is getting caught in a bit of disbelief. I need to reiterate to myself that their bodies are ready for this, even if their (and our) minds aren't.

So that's how we ended up at the ice cream shop tonight. We wanted to celebrate this huge milestone of jumping the cross-contamination barrier, and asked the boys to pick which of their Wishing Wall items they wanted to do first. As if they had been waiting for this question their whole lives (which, really, they had), they responded excitedly and in stereo: Ice cream with toppings! When you're a 5 or 6 year old, the bright colors and shapes of toppings is too much to resist, but when you're forced to stay away, the desire is even greater. Without a second thought, we headed to the local ice cream store where we immediately realized that we needed to start with a primer on toppings and ice cream stores, for that matter. When I asked what flavor they wanted, Ari told me that the store didn't have many. His experience was just that - the only choice they'd been given previously was vanilla or chocolate (because those came from dedicated chocolate and vanilla frozen yogurt machines). I explained that there were many flavors at the store, and that they could even sample different flavors. That blew their little minds and overwhelmed them, so I just handed Ari a Cookies & Cream sample, and he was thrilled.

As for toppings, we had a lesson there, as well, walking through the different types. Aviv couldn't limit himself to just one, and I wasn't about to make him. They had earned this, damn it! After they ate their ice creams, they spent more time peeking through the glass counter at all of the flavors, letting their minds register the fact that this was a new, open world for them.

This has all gone so smoothly, and so quickly, and while we're not done yet, progress is happening and things are definitely changing… I just need to take a breath and pinch myself that it’s real. Moments like tonight, when Orr & I crumbled 4000mg of nuts into muffin cups to make their chock-full-o-nuts cupcakes help to make it feel real, but it’s still going to take time. Some fresh bread (Acme! Arizmendi!) and toppings should help pass the days…  : )

Welcome to nuts.com!

Never thought I’d see those words… we used to order regularly from peanutfreeplanet.com; last night marked our first order from nuts.com, as the volume and variety we need (to give some raw/whole nuts in baked goods, some covered in chocolate for easy eating, etc.) is getting bigger. That’s definitely going to confuse some email profiler/marketer out there…

Things have been going extremely well these past 2 weeks. The kids have been taking their nightly dose well with minimal reactions (occasional stomach pain or flushed cheeks, but that’s it), and the excitement over the peanut M&M’s has not worn off; it is the coveted finale to a multi-tiered dose: some nut powder in apple sauce, some pieces baked in a brownie bite [with color coded candy on top to differentiate Ari's from Aviv's], then finally the peanut M&M’s, in all their glory. 

A&A have continued their quest to learn more about nuts, checking out books from the library that describe the different types and joining us at the market to see the varieties. They have also added a few new items to the wishing wall: eating a Z Bar (they enviously watch other kids eating them all the time), and trying peanut and other nut butters. They might actually get to do those things sooner than expected… at some point (likely coming up quickly, either at Tuesday’s updose, or at the next one) they’ll be over the hurdle of cross-contamination risk. What I believe this means – and trust me, it’s hard for me to get my head around, so I have a loooong list of questions for their doctor on Tuesday – is that they’ll be able to start eating items made in facilities & on equipment that process nuts, as the related risk that used to exist (that is, that they ingest small amounts of their allergens, which could cause reactions due to their level of sensitivity), goes away. Not as quantifiable/recognizable for the kids, but very real on the stress-o-meter for us, is the fact that table tops, play equipment, etc. would also cease to be an anaphylactic danger at that time. Again, I might have this wrong, and I have no idea how we operationalize this shift, but the main questions running through my head are whether our existing procedures around hand wiping, school protocols, carrying food everywhere, only buying certain brands, etc. all change, and if so, phased or immediately? I believe the latter, but I need to hear it from Dr. Nadeau. That will be a huge change for us both practically and mentally. Until then, we’re holding status quo.

Passover and Easter each brought ‘perspective moments’ this weekend. We were at a friend’s house for an egg hunt today, and all the kids were playing together upstairs. While I was downstairs replacing the candy in the plastic eggs A&A found with safe candy I brought from home, Ari came tearing down the stairs and made a beeline for me. He was frazzled and immediately reported that one of the boys upstairs was eating a peanut butter cup. I went to assess the situation, and Ari disappeared; he didn’t want to be anywhere near the offending candy or child until the situation changed.  Aviv was upstairs watching the boy eat the candy, sitting at a bit of a distance away, not touching the boy but because he didn’t want to stop playing, he continued to handle the same toy that the PB-eating boy was handling. The three of us had a short conversation about safety and both boys went to wash their hands. Only after Ari heard the boys go back upstairs did he reemerge, ask for confirmation that everyone washed hands, and then felt he could resume playing with them. Those are the kinds of responses that our family has hard wired into us at this point, and that won’t change overnight.

Friday night was also the first night of Passover, and the kids assisted me in our yearly charoset making. Charoset is a staple Passover food that traditionally contains nuts; needless to say, the kids haven’t known one that way. As we chopped the apples and dried fruit this year for it, we talked about how this would be their last Passover with nut-free charoset. My replacement sunflower seeds (that aren’t fooling anyone) can finally go! : )  The kids are old enough this year to join us in observing Passover, meaning that they aren’t eating any leavened bread this week. While out yesterday, we searched for a restaurant that could accommodate our need for nut-free AND Passover-friendly food... not easy. It reminded us to be thankful that, as difficult as their nut allergies have been to manage, we’ve only had to manage nuts, not the myriad of other allergens (like wheat or gluten) that so many others struggle with. Over the years, I often thought – if both kids had to have allergies – of how lucky we were that they had the same one, and that point was highlighted this weekend. I have tremendous respect and empathy for families who manage (both logistically and emotionally) multiple allergens, and as we gear up for our next updose to 4000mg (!) on Tuesday, I am hopeful that Dr. Nadeau’s research can ease the burden on their lives as well.

Melts in your mouth…

Huge day today! The updose was very successful, with both boys transitioning smoothly to 2350mg and eating real, looks-like-a-nut-feels-like-a-nut nuts today. The boys were excited all day in anticipation of starting ‘real nuts’, probably fueled by the promise of peanut M&M’s, the most visible and easily recognizable candy of all the taboo candies out there for them. Aviv was so excited about the prospect of having his first M&M, that he did a little dance in his seat the whole way down in the car, and even announced at school today that he was going to have his first nuts. While Ari has been happy to talk about this process with anyone, Aviv has been reticent; today was the first day he seemed to feel comfortable (or safe? Or excited? I’m not sure…) enough to bring up the topic on his own and share this milestone with his teachers. I’ve been concerned about how this has been affecting him emotionally, and it was a relief to see his excitement and hear him sharing proudly.

While the boys got settled in for their vitals check and began their movie du jour, Orr & I got a lesson from the SAFAR nutritionist in protein contents of different nuts, which types to use for dosing (glazed, chocolate covered, etc.), how to make the nuts palatable and measurable (raw jammed into a brownie, cooked into little muffins, etc.), and other tips for the next two weeks of dosing. We’re in a transition dose, between all powder (last time’s dose) and all nuts (next time’s updose), where they’ll have some of their nuts in a powder (that we’ll continue to mix into pudding or apple sauce), and some as actual nuts. Ari will have one and a quarter actual walnuts (plus his powder mix of hazelnut and pecan), and Aviv will have three quarters of a walnut and 2 peanuts (plus his powder mix of hazelnut, pecan and cashew). Peanuts are easy (uniform size and covered in sweet chocolate and a candy shell? Thank you, Mars Co.), but finding properly sized walnut pieces (to make sure the weight is accurate for the dose) is actually challenging, so we’ll have to figure that out quickly.

Then it was time for their dose: large quantities of pudding and apple sauce, respectively, with their powders before we turned to their cups of actual nuts. It’s funny – even though we all knew that the powder they’ve been eating for the past 2 weeks was ground nuts, it didn’t have the same visual/emotional impact as actual, whole nuts. There was a quiet moment when the four of us looked at their cups of nuts, and each other, as we absorbed the moment. Aviv turned to me and quietly told me he was scared. Me too, honey; me too! We reminded them that their bodies were getting stronger and that they could do it, and then we spooned glazed walnut pieces in to their mouths, watching nervously, curiously and excitedly as they experienced them. Neither kid loved the taste (walnuts can be a bit bitter), but ate them without issue. Then as the big finale, Aviv got to have his first peanut M&M’s. He peered into the cup to look at them, and Ari insisted on getting a close look too – this is the closest they’ve ever been to them, after all – before Aviv gobbled them up, beaming and proud.

We sighed with relief and listened with pride as the boys announced their success today to grandparents and friends on the way home. Aviv even asked that we tell his teachers tomorrow. I can hardly believe it. I remember sitting in a meeting for the SAFAR Advisory Counsel a month ago and hearing another mom tell of her daughter’s first peanut M&M that week, and getting teary, knowing how big that moment must have been for her, and also feeling that I couldn’t really imagine that/when that would occur for us.  I knew intellectually that this day would come; I’m just so stunned that it came so soon. I’ve been in contact with a few parents of kids who are in the non-Xolair trial, and they’ve had slow and steady updosing for 9ish months to get to the level we reached today in our first updose. I wonder if the wonderment of reaching each step feels as surreal, as there is more time to prepare for it and build toward it in the non-Xolair trial… sort of like having a baby, where the 40 weeks helps the baby fully form, and the parents more fully grasp how their life is about to change. It doesn’t make the wonder of having a baby enter your life any less amazing; you just have a little longer to feel the kicks, see the ultrasounds and absorb the reality. Here, we’re still trying to absorb the reality of this accelerated process; big smiles and happy shrieks of “We ate our first nuts!”, certainly helps.

A new milestone

The last two weeks – once we got past Day One and the first night’s rough reactions – were smooth sailing. Each night, the kids easily ate their dose (Ari licking the bowl clean, trying to get every bit of chocolate pudding, and Aviv, finding the apple sauce and cinnamon combination to be his favorite) with minimal to no reactions. Instead of the trauma of that first night, we’ve enjoyed the time together each evening… reading books, playing games and talking. This is truly amazing time together – mandated quiet, quality family time - that we feel blessed to have.

Tomorrow we go back to Stanford for their first updose, this time to 2350mg – almost double what they’ve had these past two weeks. I was rendered speechless on Friday when SAFAR staff contacted me to consult about this next updose, and told me that the amount of powder involved at 2350mg is so large (about half a cup), that it becomes unwieldy to mix into pudding or apple sauce, so they suggest we replace one or two of the nuts in the mixture with actual nuts. Actual nuts?! Ones that we see and hold, that we need to go to the store to buy, and keep in the house? After banning them from our house for so long, it was hard to imagine. So Ari and I went to the store this weekend to research nuts and buy some to bring with tomorrow, so that the staff could weigh them for the doses. Watching Ari interact with this new world was fascinating. He wanted to know about every nut… what were they called, what did they taste like… He wanted me to explain how the bulk food bins work, as he saw nuts in them and had always viewed them as taboo. My favorite moment was when he stood and stared in the candy aisle, and went through each brand that he knew by name as unsafe for him, confirming that he would be able to eat each of those over time. At one point he asked if he could eat the “Rick’s” candy, too. I looked confused, and he pointed to a package of Reece’s, which apparently – in the eyes of a 6 year old learning to read – is what it looks like it should sound like.

Depending on what the SAFAR team says tomorrow, we’ll likely have a combination of actual nuts and nut powder for this next round of doses. No “Rick’s” yet, Ari, but soon.

Exhaling

Just a quick update to let you know we've stopped holding our breath here, waiting to see if subsequent nights would be more like last Wednesday (scary and exhausting) or last Thursday (calm and smooth). I'm happy to report that we have had 3 nights in a row of calm, eventless dosings. Yippee! 
Ari continues to announce each evening "I love doses" (and asks if he can have an extra one, because he likes the taste of both the nuts and the chocolate pudding that the nut powder comes in), which Aviv follows with "I hate doses", like that grumpy smurf who was always trying to be contrary. He doesn't like the grittiness of the nut powder, but is going along and not fighting the dose, thankfully.
Two new wishes were put forward today for our Wishing Wall: having pizza from any pizza place and eating popcorn in a movie theater. As Ari focused on food-related wishes, Aviv quietly said that his wish was to be able to talk to G-d. Aviv's depth often renders me speechless, and even our well-earned exhale stopped for a moment after that.