Milestones

All continues to go smoothly with Ari & Aviv and their ability to live life as it is presented… no special accommodations, no special food, no fears, and most amazingly, no limitations. They’ve gone to sleepovers at camp and spontaneous play dates, enjoyed treats and sweets everywhere we go, and experienced their first donut shop. Ignoring the strange looks from others wondering why it took us so long at the counter (to first answer the barrage of questions, “What is that one? And that? What’s in there?”), Ari was the proverbial kid in the candy donut shop, and it was beautiful to see.

In awe at the donut shop

Trying one of each...

   

Proudly displaying bare wrists!

Beyond the continued firsts, there are three big milestones to acknowledge. Most recently, A&A were able to take off their Medic-ID bracelets. Their tests have been consistently good (in showing their continued desensitization to all of their nuts), so we were given the green light to remove the bracelets. Although I loved the many creative suggestions you sent me for how to celebrate that milestone, we ended up doing it small and personal, just the four of us talking through this step. It felt so big to us, and we thought the boys would be thrilled. They were giddy in the moment, but as is always the case with parenting, one should never assume kids’ reactions…  Aviv told me that night that he didn’t like the change and wanted another bracelet. What?? When asked why, he got a sad look on his face and told me that it feels terrible because now he doesn’t have our phone numbers with him wherever he goes. Ahhhhh….. Hadn’t thought about that. While as adults we may have seen the bracelets as symbols of their previous limitations, there was actually comfort for them in having our contact information close by. It was our practice to reference the bracelets when we went to large events (amusement parks, etc.), and told the boys that if they ever got lost, to look for a police officer or mom with kids, and to show that person their bracelet and ask them to call us. Now what, wondered Aviv. As with all things kids throw at us, we worked it out and he’s doing fine now (having spent time practicing our phone numbers), but it was a good reminder that the lens we see this allergy journey through is not necessarily the same lens that they see it through.  To that end, Dr. Nadeau’s staff (which has expanded significantly to support their many trials) will also now include someone trained to support families’ emotional needs and quality of life. I’m thrilled to see this evolution in study support, as the emotional roller coaster for families going through the trials is fast and furious.

The oh-my-gosh-I-can’t-believe-it’s-really-time milestone is that the boys are graduating from the study! After an amazing, life-changing 18 months, tomorrow is their last appointment in this Xolair/Multi Oral Immunotherapy Trial (OIT), and they’re graduating with flying colors. We could never have imagined, when we first met with Dr. Nadeau two summers ago, that we’d be able to see such mind blowing results and that our kids would be able to lead a regular life (& so quickly, at that). The results have exceeded our wildest dreams, and we’re both thrilled to have the boys graduate, and also a little nervous about what the rest of their lives look like. The boys ask a lot of questions, the most frequent being: “When can I stop having dose? Will I need to eat dose forever? Why do we still need to carry EPI-pens if we’re not allergic anymore?”  Boy, do I wish we had answers for those complex questions! We talk a lot with the boys about the research aspect of all of this, and how it’s bigger than their own experience. They like that a lot, and feel very proud that their participation helps other kids. It’s actually provided a context to discuss health care/data analytics (my professional niche), so at least they understand what I do at work now! We’ll continue to talk more with them about what all of this means and how they can continue to help others as time progresses. As for us and how we feel, we are so, so proud of our boys. This new life still feels surreal to us, and we continue to be amazed at the strength and tenacity of our monkeys (and the phenomenal baking skills of Orr, which continue onward) that got us here. When asked how he feels about the study coming to an end, Aviv says that he feels proud because it was hard but he knew he could do it, and happy, mostly because it means less frequent long drives and blood tests.

Ari's dose: 2 cookies = 1 day

Aviv's dose: 2 crackers +
2 Reese's PB cups = 1 day

Finally, although our participation in the Xolair/Multi OIT study comes to an end, we won’t be left adrift… The third milestone is that Ari & Aviv will begin a new study (“Understanding Food Allergies”) that will continue to conduct and oversee periodic blood and skin tests and their continued changes, run by Dr. Nadeau and her amazing staff. This UFA study will allow for the continued collection of key research data and the continued support for us (and other study graduates) as we move forward. We’ll continue to head down to El Camino Hospital (where the studies are conducted now) every few months, will stay involved with the Stanford Alliance for Food Allergy Research Community Council, and will continue to support all of the amazing work that SAFAR is doing to move the research in this area forward through continued studies and hopefully phase 2 work, so things may not look or feel very different for us on the surface, but the change in our life at core levels is enormous. To many more milestones!