Hola Mexico, and goodbye to 2012

While life is not completely normal for us, it is infinitely better than when we were here in Cabo one year ago. Last year at this time, we brought a suitcase full of safe food, wipes and medicines, and a laminated card that explained (in Spanish) about the boys' allergies and the detailed precautions needed to be taken by food preparers, house cleaners, etc. I watched over every pool toy that was shared with them and worried all day, every day. Vacations weren't really vacations, a year ago; they were just chaos – exacerbated by new, unknown fears - in a new location. This time, it's different. We boarded the plane together (brings tears to my eyes to be able to board as a family without a full decontamination!), the kids play freely with other kids at the pool, we can order any food at any restaurant we want, and while we brought a lot of food with us again this time - specially-made nut brownies & cookies, hazelnut milk and pecan crunch (a pecan trail mix that has, surprisingly, met with rave reviews from Ari) - it's only for their dose.

The stresses on vacation this year are more of the standard parental variety: kids fighting and trying to drown each other in the pool, mosquito bites, sunburn. While none of the anxiety comes from fear of food or surfaces, there is still some food-related stress: the stress of getting the dose in, and once in, the effect on mind and body. Ari's stomach discomfort continues as he struggles with eating his very filling dose and wanting to eat normal foods, and the challenge is magnified here in a destination where there are so many new and interesting local foods to try. The result is a constantly bloated tummy (see picture of seemingly 8 month pregnant child, right), digestive challenges and frustration. He was SO excited to eat tortilla soup, empanadas, fish tacos and stuffed sea bass the other evening after finishing his dose (what a blessing, normally, to have a child who truly loves food), but boy did he pay for it over the next 24 hours. So yes, there are still aspects that we are hoping smooth themselves out to enable a true feeling of normalcy, but we count our blessings for how far we’ve come.

As 2012 comes to a close, we take a deep breath and ready ourselves for another year forward. Another year of miracles and firsts; another year of helping to further research toward treating food allergies; another year of feeling so grateful and thankful for all of the amazing people in our lives who have enabled us to live a very different life today than we did a year ago. Our holiday card, summarizing and wrapping up this year, is below. Wishing you all the best for a safe, healthy, happy new year.
--------------------------------------------------------------------------

Our lives have changed dramatically since our last holiday newsletter. You may recall us sharing last year that the boys were being considered for a clinical trial to treat their food allergies. Since January, the boys have been participating in the trial and the results have been nothing short of miraculous. Both kids have been desensitized to their life threatening allergies to nuts, and Aviv has even gone negative to five of his nuts… that means his DNA actually changed, removing the allergy from his body. The boys not only can eat nuts (and all foods made in a facility with nuts) now, they must! Every day they must eat a maintenance dose of their allergens to keep their bodies remembering the immunity they have built up. This part is not fun for them, as they don’t enjoy eating the food that for so long was dangerous to them, but it’s what keeps them desensitized, and we’ve been tapping every creative method we can think of to make it easier.

We would be lying if we said this hasn’t been tough – emotionally, physically, logistically – as we focused almost exclusively on supporting their successful participation in the trial, and there were moments we didn’t think we’d be able to continue with it. We are thrilled to be able to say that thanks to the best research team in the world at Stanford, amazing friends and family who supported us along the way, incredibly supportive schools, two boys that put in a lot of hard work and defied the odds, a lot of creativity and some very large prayers being answered, we have been able to continue in the trial and our family is now free from the fear that used to weigh on us at every turn and with every interaction. If you’d like to support this amazing research with a donation, we’d love for you to join us in giving here: http://foodallergies.stanford.edu/

Thanks to the life changing results of the trial, this was an amazing year of ‘firsts’ for us. We created a Wishing Wall of all the things we wanted to do (but couldn’t do previously due to their allergies), and savored each item that we were able to check off as the year progressed. The kids were able to experience their first trip to Disneyland, first sleepovers, fresh bread and pastries, ice cream with toppings, Thai food, boarding an airplane together as a family, trick-or-treating, the freedom to eat or play wherever they want, and the return of Orr’s delicious chocolate pecan pie to our Thanksgiving table. Trust me when I say that you don’t know pure, innocent pleasure until you’ve seen kids stand and stare into a bakery counter for the first time, awestruck at the smells and sights, and then savor the sweet tastes we take for granted for the very first time.

When Ari and Aviv aren’t changing the world one nut at a time, they’re two regular boys growing, thriving and loving school. Aviv has embraced Kindergarten and riding the school bus like a pro, and continues to keep all of us on our toes with his endless energy and ability to find the loophole in any set of rules. He enjoys tennis, tee ball, and foos ball, and loves to climb, explore, build and destroy. Ari won his first chess trophy, and loves Hebrew, math, reading, and everything else that First Grade has to offer. He continues to lose teeth and grow out of his clothes at a rate we can’t keep up with, and both boys spend their time fascinated by Star Wars, building Legos, playing board games and hiking.

As 2012 wraps up, to say we feel blessed – despite the exhaustion! – is an understatement. We couldn’t have imagined this time last year that our kids would be able to go on play dates, on sleepovers, to school and to the playground without fear of anaphylaxis, but now they can. We feel truly blessed and grateful for all that this year brought, and wish for the gifts of good health, miracles and happy firsts for you and your family in 2013, as well.

Nes, Gadol, Haya, Poh

As Chanukah drew to a close the other night, I couldn’t help but reflect on the past, both recent and long ago. Just one short year ago at this time, I ordered Ari & Aviv specially-made chocolate coins (a traditional Chanukah treat) from a nut-free factory, so that we could bring them with us to all the Chanukah parties we went to. I remember standing at those parties worrying as they touched the wrapped coins (that we didn’t provide) while playing dreidel games, fearful that the coins had been touched previously by another kid who had eaten something with nuts, and left deadly oils on the wrappers. Beyond the chocolate coins we brought with, there was almost nothing they could eat at the Chanukah parties we went to. Not this year. This year, they ate everything, and I do mean everything… latkes, cookies, jelly doughnuts, chocolates, candies, appetizers… whatever was served, they ate. I felt I needed to apologize to one friend when Ari did his best to make up for the past few years of not being able to eat anything at her annual party by wiping out several candy bowls and an appetizer platter. Both kids gorged themselves on menorah-shaped cookies, and played freely in rooms filled with kids and treats without me having to watch over them with fear.

Which brings me to Chanukah from long ago…  Many of you may be familiar with the letters on dreidels (the Hebrew letters Nun, Gimil, Hay and Shin) which stand for the phrase ‘a great miracle happened there,’ referring to the miracle of the oil that burned for 8 nights thousands of years ago, when it should only have lasted for one. The interesting thing is that those are the letters on American dreidels. In Israel, the final letter is Pey, not Shin, which stands for ‘here’, not ‘there’. This year at Chanukah, I felt that we should be playing with an Israeli dreidel, as a great miracle happened here. This time last year, we had just finished the oral food challenges, and were preparing to begin the Xolair in January. Last December, we couldn’t have imagined the true miracles that would occur in this one year, with both boys desensitizing to all of their nuts, and Aviv going negative to five of his six nuts. Nes, Gadol, Haya, Poh (“a great miracle happened here”), indeed.

And if it doesn’t seem too greedy, I’m going to wish for another miracle. Ari is really struggling with his daily dose… it fills his stomach up so much that it hurts, and he yearns to eat normally. He was a kid that had such a refined palate and love of food, and he is sad each day that his ‘regular food’ opportunities are limited so that he doesn’t fill up too much and not be able to finish his dose.  We can’t help but remember his words several months ago, when he lamented that, “We did this study so that we could eat anything we wanted, but the truth is, we can’t because we have to eat dose.”  He sees Aviv’s amazing progress, and he’s frustrated every day. A&A’s next round of tests is mid-January, and we’re hoping that Ari goes negative to at least one nut. I’m going to hope for our dreidel to land on Pey that day.

Giving thanks

I’m delinquent in posting my Thanksgiving-themed entry, but not in actually being thankful. So, so much to be grateful for this year…

Amazing friends. You may remember me mentioning the medicine crisis we were in two months ago when we discovered that the only antihistamine that helps Aviv keep his environmental allergies in check (and, seemingly and anecdotally, appears to be supporting his great success in desensitizing) was discontinued. We panicked for about a minute, then went full throttle on the problem. We went to every CVS (the only seller of the generic version of children’s chewable Zyrtec we wanted) around and bought all the remaining supply, but most stores were already out. We tried other manufacturers; no one was making it. We spoke with CVS’ corporate office; they tracked down the issue and confirmed that the product was discontinued because they were having trouble getting enough supply from the manufacturer. They are seeking a new manufacturer, and hope to be able to put the product back on the market soon, but couldn’t estimate a timeframe. They are prohibited from selling product returned from their stores, so the only way for us to get our hands on any remaining stock was to find CVS stores that had not yet received the corporate order to pull it from the shelves. Here’s where our amazing friends come in… I sent out an SOS email to friends in various parts of the country and asked them to scour the CVS’s near them for any remaining boxes. Like a cartoon where boxes start raining from the sky and pile up so high that you can’t see the cute kid in the middle, boxes came. One after another, and another, and another. From Nevada and Florida and Los Angeles and South Carolina and beyond… they arrived. We got emails from those who took on the quest with a vengeance (“I found 6 boxes in Truckee, and am now off to 3 more CVS’s in Reno!”), resulting in us now having enough boxes to last us another year. Every box that arrived brought tears to my eyes… thank you, my dear friends, who made time in your lives to hunt down boxes of little pink pills to help Aviv. (Ari, too, is now taking it, in the hopes that there might be a linkage between regular antihistamine use and successful desensitization.)

A new reality. Small reminders of the life we had just a year ago pop up often and in funny places. Today at the hair salon, a stylist who hadn't cut my hair in over a year was preparing to put the final touches on my head when she said, "I remember that your kids have severe nut allergies, so we need to check the labels on the products to see which ones are safe to use." Yes, even seemingly innocuous things like hair products used to be a potential source of danger, as many toiletries are made with nut oils. And at our Thanksgiving table this year, not only were we free of food-related fears, but we were able to welcome back one of Orr’s favorite desserts. It’s been many years since he was able to make his famous chocolate pecan pie, and Ari certainly enjoyed having his pecan dose in pie form that night! .

Our amazing medical team. From the cutting edge research, to returning calls and emails at all hours of the day and night, we are blessed to have the best medical team one could hope for. Both our pediatrician (Dr. Nelson Branco, who has been with us through so many questions, issues and hospital visits since Ari’s premature arrival seven and a half years ago) and our SAFAR team (Dr. Kari Nadeau and team, who have been amazing and supportive through every tear, fear and step along this journey) help us to solve problems when we’re at a loss, stay motivated when we’re spent, and be hopeful when things seem bleak. Things don’t seem bleak anymore, and we have our amazing medical team to thank for that.

New challenges. This might seem like a funny thing to be thankful for, but I am even grateful for the new challenges that we face each week as the kids’ bodies morph and adjust to their new world. It keeps us remembering how new and fragile these changes are, and how critical it is that we support more of this research through active participation, financial support, education, awareness building and advocacy.  Our latest challenge (beyond the usual cries of ‘I don’t want my dose!’), has been that Ari’s tummy has been bothering him and “too full” for about a month now, likely related to ingesting his daily dose. 60 nuts/day is a lot of fiber, fat and protein, after all, for a little guy.  Yet another new puzzle to solve, so we’re adding some digestive aids and Pepcid to his routine, hoping that will help him.  If not, we’ll try something else until we figure it out. Yes, new challenges both keep us on our toes and remind us of how far we’ve come, and make no mistake – it’s a long way, baby.