So many miracles

Tears are welling up, and I don’t know where to start. With such anticipation and prayers and hard work bringing us to today, I was worried we’d be disappointed with the boys’ test results. Instead – we’re over the moon. ARI WENT NEGATIVE TO TWO OF HIS THREE NUTS! Ari’s skin tests were clean as a whistle for walnut and pecan, leaving only hazelnut, and only a small reaction at that.  Aviv continued to test negative for five of his six nuts, with peanut still showing a small reaction. His pecan result was nothing to be concerned about, but there was the smallest touch of redness, so we’re going to keep a close eye on it and go back in 6 weeks to test again. It’s really so hard to believe that not only are the boys completely desensitized, they each only have one nut left that their bodies are even showing remnants of an allergy for.

Walnut (bottom row, 2nd from left) & Pecan (bottom row, far right) are negative!

Ari hears the news!

Cashew is on the far left.

I think back to the double blind food challenge day (part of the pre-trial testing) when Aviv was given cashew. It was November 2011, and 1.6mg of cashew protein triggered the beginning of a reaction – we just didn’t recognize the symptoms as they were unusual (complaints of ear pain). He continued with the cashew ingestion, and at 25mg he went into full blown anaphylaxis – hives and swelling everywhere, restricted breathing, wheezing… it was one of the scariest moments of my life as I sat in his hospital bed holding him, trying to calm him and slather topical antihistamine on his inflamed body, while oxygen, albuterol and other medications were administered. Contrast that moment with today, when his cashew test showed nothing. Nada. Zilch. Not even slight redness from the skin test prick point. I intellectually know that he eats cashews daily (without event) as part of his dose, but it was striking to see nothing appear under the ‘C’ written on his arm.

Aviv with his hero, Dr. Nadeau

The miracles keep coming, and we feel so, so blessed. Blessed to have gotten to this day; more specifically, to have gotten through the many incredibly hard days that preceded it. I spoke to a mom today whose son is in the same study as A&A. Her son is progressing well but his daily dose is now growing in size to the point where it feels overwhelming. All they talk about and fight about is dose, and it feels impossible. Beyond the logistics of making and getting in the daily dose, she flies from New York with her son every two weeks to go to SAFAR, taking redeyes to minimize the amount of school he misses. It’s a struggle to figure out how to logistically, emotionally and physically make this incredible opportunity work. She is amazing for doing all that she’s doing to help her son, and my heart ached hearing about their struggle. We have been there, too: struggling, crying, overturning stones, negotiating, scrambling for solutions – every part of what she’s going through. I am so grateful for this community of clinical trial families that shares tips with one another as we forge new ground, and always humbled by the support that we feel from everyone in our life during this journey. I really believe that the universe sometimes tests us, but ultimately throws us a life line when we need it. Just as we needed (and got) one when we were at the verge of dropping out of the trial because Aviv’s dose was so enormous and the emotional pressure was so crushing, Ari (& his tummy) needed one now. Going negative helps to inspire and remind all of us that this is real, that it’s life (and body) changing, and that it’s worth all of the effort and faith and tough moments. Whether Ari’s going negative came from his obsessive rule following and diligence in eating every bite that he’s supposed to every day, the addition of a daily antihistamine to his regimen, the mere passage of time, the universe answering prayers, or the sheer power that comes from all the fingers that this amazing community of family, friends, teachers, doctors, blog readers and beyond crossed today – it worked. He had tears of joy and pride in his eyes as he fell asleep tonight… Thank you for helping us get there.