Let the treatment begin!

Tomorrow is a big day for us: it's the first shot in the boys' desensitization treatment. Everything up until now has been "pre-treatment" work (food challenges, blood & skin tests, confirmations, etc.).  Tomorrow is the first day of the actual treatment regimen, and we’re having trouble believing it’s real. We’ll go tomorrow afternoon – after what should be a normal school/work morning for us (other than our minds racing a million miles an hour!) – down to Stanford so the boys can each receive one shot of Xolair that will ‘prime’ their bodies to suppress their IgE’s during the course of the autoimmunotherapy (the ingestion portion of the treatment). During each of the first 2 months (January & February), they will receive 1 shot each, but no nuts to ingest. Somewhere around the 9^th week (we’ll have to see as it gets closer), they will begin receiving their daily dose of nuts in addition to the monthly shots. Now, this drug is not without its potential side effects, of course, some of which are strong enough that the FDA requires it to be administered in a medical facility or doctor’s office. I’m choosing not to focus on those potential side effects right now. 

It’s funny… even though we’ve known for the past month that this first shot was coming, Orr and I haven’t been able to get our heads around it. There are people we’ve wanted to contact to share the news of being admitted to these trials - including the doctors from Tel Aviv, Dallas and Portland who gave generously of their time to talk with us last year about treatment options, and whom we considered moving closer to, to enable them to treat A&A – who we felt hesitant to contact, for fear that it would make this dream bubble burst. Now it’s starting to feel real. We sat the boys down tonight to talk to them about what to expect tomorrow… if there’s anything we’ve learned in this journey is how much our kids want us to be honest and tell them everything in this process.  We got an angry earful from Ari after the unblinding of the 3 challenge nuts, when he figured out that we knew they were receiving nuts in those challenges, and hadn’t told them. Truth be told, we normally tell them everything and are very open about their medical condition, issues, steps, etc., but it was hard enough for us to cope with the fact that they would be receiving nuts during their challenge appointments without freaking out, that we didn’t want to put that upon them, as well. They like to ask questions, though, and asked us point blank what was in the challenge food they were eating. We were technically accurate in our answer (“Only the nutritionist knows for sure; not us or Dr. Nadeau…”) but intentionally left out the detail that we knew it was a nut, just not which nut. They were NOT pleased, and we have promised to be 100% forthcoming with them moving forward.  To that end, we told them tonight that the shot tomorrow will take longer than most shots they’ve received (we believe it will take 1-2 minutes to inject) as it’s a thick liquid, and that it will likely hurt. We received advice from another mom (whose daughter is in the study) to use a product called Buzzy – a funny little combo ice pack/vibrating device that you strap on to the injection spot prior to a shot to freeze and confuse the nerves. The boys are excited to try out Buzzy tomorrow, but have admitted to being a bit scared. In true form for our kids, wherein Aviv dives head first into new situations, he excitedly declared, “I want to go first! Can I get my shot first?” Luckily, that is exactly what Ari wants (that is, to watch his brother engage in any potential dangerous situation first before he’ll consider trying it), so they’re a good yin/yang for each other.

While tomorrow is a big day for us, I have to remember there will be many big days for us in this journey… after the first shot, there will be the first ingestion, then the first ‘updosing’, no doubt the first reaction, hopefully not (but potentially) the first ER visit, and finally, the ‘graduation’ and post-treatment firsts (too many to list here!). That’s a ways off, so for now, I’ll focus on this particular big day when the fears that ‘maybe we misunderstood and we aren’t really in’, will finally go away. So with the iPad, snacks and Buzzy already packed up, we’re excited to start our first of firsts tomorrow, and believe for sure that this is real.