Ice, Ice, Baby

Last night, I put to bed 2 slightly anxious kids ("How much will it hurt? How long will the needle be?") before beginning my own tossing and turning through the night. By this morning, however, Ari's furrowed brow had given way to dancing eyes. "Ima! I'm excited about today!", he announced this morning. Before I could ask why, he continued, "...and I wish we could go every day!" OK- now I was really confused. He explained: "Today is the first shot, and the sooner we finish all of them, the sooner we'll be done with the treatment, so I wish we could go every day and finish sooner!"  No amount of data, experience or years can hold a candle to the pure perspective a child can offer.

So off we went today, the kids talking nonstop in the car on the way down, discussing which of them was going to look at the needle (“No way! Not me!” declared my mini-me, while Aviv proudly announced that he wanted to see it). Upon our arrival and settling in to the room (where the boys, sweetly, position themselves right next to each other in the hospital bed like two peas in a pod), we were given a stack – literally: 17 pages per child, in duplicate – of consent and disclosure forms to review and sign. All the risks of the Xolair, our obligations being in the trial, the personal information we agree to share in the name of research (ahhh... more irony), and the statement that there is absolutely no guarantee of results. As anyone who has bought a home knows, there is something very sobering about signing a big stack of legal documents. Amidst the signing away of liability, there were two parts of the packet that stood out for us… one was the titling of the study as ‘Phase 1’. Phase 1 of a clinical trial refers to the stage in which researchers test an experimental drug or treatment in a small group of people (usually 20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects. This was it. Our kids are a part of developing the foundation for this amazing research – so exciting, and also fraught with concerns over what is not yet known. The second part that stood out was the schedule detailing the protocol. There it was in black and white – 8 weeks of priming the body with Xolair, then oral desensitization (i.e. ingesting the allergens) for weeks 9-24 (with weeks 9-16 continuing the Xolair), then done! Another 28 weeks of follow up (so that they can monitor and collect information, making for a 52 week total), and that’s that; all wrapped up with a bow. We even have our next two appointments scheduled, including the one in which they’ll start their ingestions (March 13^th). Holy moly! That feels real!

After we finished our stacks of paperwork, the kids prepped for their shots. We strapped Buzzy to Aviv’s arm (and applied an ice pack to Ari’s) to ice the area. For anyone who has particularly un-fun shots in their future, let me tell you – icing is the way to go. Definitely do it. It numbed the area so well that the pain was minimal. Aviv’s arm almost defrosted as he insisted on asking Tina (the amazing nurse who is trained in Xolair administration) a litany of questions. (“Why does the shot have to be on the arm, not the leg? Is this the smallest needle that you have? What will it feel like? Are you sure you’re not just saying it won’t be that bad, but it really will be? Sometimes that happens…”) After the interrogation was complete (and bless Tina for her patience!), Aviv looked at the needle, braced himself, and got his shot, which only lasted 10 seconds. A&A receive a relatively low dose of the Xolair (75mg), so Tina is able to administer the thick liquid in that relatively short time; Buzzy (and the iPad, playing the Lego movie for the bazillionth time) also helped with distraction. Some of the other kids in the study with higher sensitivities than our kids receive 300mg doses, which apparently takes a looong painful time… we got off easy on this one.  Ari had no questions (knowing that Aviv tested the process first), and quietly and quickly sat for his shot, not breaking gaze from the iPad.  It went as smoothly and easily as we could have hoped for, and better than we expected. Woohoo!

We watched the boys there for 30 minutes after to make sure there were no complications. A little face flushing, but otherwise they were their usual high energy, famished selves. (Truly – the amount of food we bring, and they polish off, during these appointments is impressive.) 

One thing that was interesting today was that there was a college student at the hospital who is both in one of the trials himself (milk allergy), and who is also doing research on the emotional impacts of food allergies on families. He asked if he could talk to us, then briefly interviewed Orr and I, and then each of the kids separately. They were asked whether having allergies ever makes them nervous. Both boys said yes, and talked about how being around nuts makes them worried, so they try to walk away from them [nuts] whenever they can. I stood away from the boys during their interviews, out of sight but within earshot. I couldn’t help but feel proud at how in touch they are with their emotions and their ability to articulate how they feel, and even more committed to participating in this trial to change their reality. The interviewer also asked them who is more worried about their allergies – them or their mother. Well duh… both boys knew the answer to that obvious question. : )

In the car on the way home, Aviv fell asleep, the emotions of the day having taken a toll on him. Ari was chatty and content with how the day went, the candy treat they received afterwards for having good behavior (it’s crazy how long you can stretch out the doling out of Halloween candy!), and the fact that we had decided to leave Buzzy there with the allergy team for other kids to use during their appointments. “We did a mitzvah!” he announced, very pleased with himself, and entirely forgetting any anxiety from the day – or the hour - before. Orr and I quietly took in the fact that we’re really buckled in now. He said it feels like the beginning part of a roller coaster, where you’re strapped in, headed up the hill, where there’s no turning back and you know that the big scary stuff (that you came for!) is just up over the crest, coming very soon but in what feels like slow motion. Buzz buzz, indeed.

…

I want to take a moment to say thank you. Many of you who have emailed words of support or kept the boys in your thoughts, and many of you made me teary by making donations to the Stanford Alliance for Food Allergy Research (SAFAR) in Ari & Aviv’s name. We are so touched by your generosity, and we are so glad to hear of more support for Dr. Nadeau’s groundbreaking research that will help A&A, and so many others. There is no gift that is more meaningful to us than that. Thank you so much.

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.