Two very different posts from me within 24 hours... First, the
celebratory one: Aviv graduated today!
In keeping with his personality (always making
sure to keep us on our toes), Aviv went in today for what was to be part 1 of 2
appointments that, collectively, would amount to his ‘Week 24’ tests and
graduation. Despite being a little sick (and weak/tired from his recent hunger
strike), he finished everything he needed to do, such that we won’t need
a second Week 24 appointment. Due to the number of allergens being treated (and
the challenges he’s having with ingesting), the SAFAR team required only 4 grams
per nut (instead of Ari’s 6), which felt like a miracle, and it took a steady
stream of bites (and moral support) between 9am through 3pm, but he did it. We
even have the ‘Congratulations!’ letter to prove it. He is now officially desensitized,
and moves into maintenance mode.
Perhaps even more surprising to us than
the fact that he finished the full test dose today for all 5 nuts were the
results of his skin test. He did today what he will do at each of his follow-up
appointments, which is a blood test and a skin test. When we started on this
journey a year ago, he did the same two tests, and his skin test then resulted
in a sea of big red splotches all over his back. We watched today as the test
was given, and waited for the splotchy sea to emerge again, but it did not. The
reactions that he had today were so minor, that we were sure there had been a
mistake. He was tested for the five nuts he’s been treating, plus pistachio. I
don’t talk about pistachio much, but he is/was allergic to that one too;
however the FDA has not cleared pistachio for this or any of the other oral
immunotherapy studies (due to an absence of pure pistachios), so we were
keeping our fingers crossed that Aviv’s treatment of cashew (which is, genetically
speaking, a sibling of pistachio) would result in a ‘bonus’ treatment of the
pistachio. Not only were his skin reactions to pecan, peanut and cashew mild,
but he had NO reaction whatsoever to walnut or hazelnut, and only a very mild
reaction to pistachio. Had I not watched the entire testing process myself, I
wouldn’t have believed it. Frankly, even Ari’s skin test reaction was stronger
to pecan, walnut and hazelnut than Aviv’s was. (Ari’s skin test stayed about
the same as we saw at his test 6 weeks ago.)
Finally Aviv catches a break! I
feel like he gets the short end of the stick so often when it comes to his health,
but this time he pulled the golden ring. We’ve been told that the skin tests often reveal false positives, as the
skin reacts more easily or quickly, so we should expect that the skin reactions
would be the last to disappear during this process. Seeing Aviv’s skin test results
today were so motivating… there it was, in red and beige: the facts. This
study, as hard as it is every day for him, has absolutely changed his body, his
overall risk profile, and his life.
Now to address the second post (“Crossroads”
from last night, but which, for those of you who receive this blog via email,
you’re receiving at the same time as this one due to a technology glitch)…
nothing in that post has changed. We are still struggling with how to proceed,
as we’re very concerned about the adverse emotional/psychological impact on
our family that the daily struggle to get Aviv to ingest his dose produces. The
new information for us is how well the treatment has worked medically and
physiologically, and that’s very inspiring for us; it’s still hard for Aviv to
grasp, though, and as a result doesn’t help motivate him. We celebrated him
tonight in the way that can motivate a 5 year old – any food he wanted to eat,
presents, accolades, time together playing – with promises of more of the same each
evening (especially the free range on food) for any day that he finishes his
dose early. If it’s done by the time we come home, he can have a free-for-all
in the pantry and we can spend the evening doing whatever he wants – playing games,
snuggling, even watching TV (normally off limits, but we’ll do whatever it
takes at this point to incentivize him). Hopefully this will help as we continue
to explore alternate ways to help him succeed in sustaining maintenance mode.
---
So here we are… both boys graduating the
study, eating tons of nuts each day with no reactions whatsoever, in
maintenance mode, having such different experiences. A year ago, I couldn’t
have imagined any of those things. When we started this journey, we worried
about the physical reactions that might occur along the way. We even considered
that there would be a mental shift we’d all need to go through to feel
comfortable feeding them (and for them, eating) the items that were previously
dangerous for them. It never occurred to us, however, to worry about the
ongoing emotional weight associated with the dose. How could it? No one was
doing multi-allergen trials for us to learn from, and we were so mesmerized by
the idea of removing this risk and burden from all of our lives, that we
figured we’d handle anything that emerged. We’d power through in the same way
we’ve handled other things in life… sheer will and determination. The thing is,
our will and determination can only take things so far; when positioned up
against the sheer will (think Star Warsesque Force) of a very headstrong, clever
kiddo, it’s hard to say who will win or what winning even looks like.
Over the next few days, we’ll have a
chance to absorb more about what all of this means and decide how to proceed.
For now, I’m going to crawl to bed and revel in the fact that both boys did it. It's so amazing what has occurred here, and we are so grateful to have been a part of it. A year ago, we were anxious about every library book and piece of playground
equipment that could have invisible nut oils lurking on them. We read every
label and were limited in where we could go, what we could eat, and what
aspects of life we could participate in. Now – with the [large] exception of
the daily dose requirement – we are free to go anywhere, eat anything and do
anything. Just a few days ago, at a party where we told people about the boys’ new
status, several of them invited us over for a meal, telling me that they’ve
wanted to for a while, but didn’t know how to make things safe, so didn’t want
to take chances; they were thrilled that they didn’t need to worry about that
anymore. That’s the life we dreamed about… not needing to worry about invisible
food-related dangers anymore. Miraculously, thankfully, we’re there. Now we just need to
figure out how to help Aviv stay there...
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