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.