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 13th). Holy moly! That feels real!
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.
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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.
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