I didn’t post
yesterday that we were keeping fingers crossed for another set of positive test
results at Aviv’s 2nd six week appointment today, as it just felt
too presumptuous and out of reach, but I’m THRILLED to report that Aviv did it
again! After skin tests, a blood test and a food challenge to pistachio that
didn’t even make him blink today, the results are in: He went negative to two
more nuts!! He went negative to cashew and pistachio, the latter of which he’s
not even being treated for; pistachio just enjoyed the ‘buddy’ effect of cashew
being treated, as the two are genetically very similar. This brings his grand
total of nuts that he’s gone negative to (that is, his DNA actually changed and
does not show the allergy any more) to five, leaving one (peanut) left, but
even that one is showing only a very mild reaction during the skin test, so we
have reason to believe it’s heading the right direction. (Just to highlight how
far we’ve come, when Aviv asked which nut was left, and I told him peanut, he
said, “Yay! That means I can keep having Reese’s Pieces!” Yay?!?! Didn’t think
I’d ever hear that word in relation to dosing…
“But I didn’t
think DNA could change…,” said a friend of mine who listened to me gush this
afternoon. I hear ya, sister; I’m having trouble believing it’s real too, but apparently
it is. As we took in the new news today at Stanford, there was acknowledgement of the spectrum Aviv has gone through, from being one of the kids that faced the most and biggest speed bumps along this road, to being the one with the most mind boggling results. Aviv continues to surprise us, demonstrating that he will always defy the odds and that his will is a force to be
reckoned with (in case we weren’t 100% clear about this).
Ari, trudging
along through his 60 nuts/day dose, is less than thrilled. He doesn’t begrudge
his brother’s good fortune; he’s just very sad that he’s still holding steady. It’s all relative, right? His results are
still fantastic (to be desensitized to the allergens that used to be so
dangerous to you), but it doesn’t feel that way for him in light of the
excitement for Aviv. “I don't want to eat dose; I want to eat
real food... Aviv is so lucky... he went negative to five nuts, and I haven't
gone negative to any. I'm still allergic to my three, and I have so much dose
to eat.” We’re continuing to try
to innovate new food approaches for him, but it’s still hard. We are quietly
crossing fingers that when Ari goes in for his next testing (in January), that
he’ll go negative as well.
Now for the
firsts… Ari got to participate in a cookie decorating activity at a local fair (off limits, previously), and had his very first sleepover – another item off of the wishing wall! Aviv, out of nowhere, asked for a Reese’s Peanut Butter Cup. Turns out
- despite his resistance initially - he’s a fan! That’s fantastic, as one of
them equals ½ his daily dose of peanut. Easy peasy.
Ari also decided to be be brave and try two new tastes, which it
turns out he likes. The boys helped me to make trail mix for Ari (which is great
because there’s no extra bulk/volume such as occurs with baked goods) and finally,
after begging him to try nut butter, Ari grudgingly tasted a walnut butter and
jam sandwich. To my relief and surprise, he announced, "Hey!
It's pretty good!" Well, hallelujah! The easier the delivery
mechanisms (and trail mix and nut butter are infinitely easier to find and manage
than specially concocted crackers, brownies and calzones), the easier everyday
life will be for them on a go-forward basis. Waffles (cashew, pecan, walnut,
etc.) are also the go-to easy dose food; what’s not to like about a yummy,
portable treat that you can slather with your favorite shmear?
With Aviv’s appointment over today, we are now on our own (no
visits to SAFAR) until mid-January, when both boys will go in for testing. As I’ve
been thinking of the progression of this trial and the corresponding changes in
our lives, and as I dream of getting to travel more with the kids, I have often
wondered how we would travel with the dose. Specifically, we wouldn’t have the
same worries as before (that every hotel restaurant would cross contaminate
their food, etc.), but may have a new challenge of figuring out the logistics
of bringing and administering a fair amount of nut products for dose. With Aviv
going negative to his nuts (and Ari hopefully to follow), however, I feel like
I can start to see a normal ‘steady state’ in our future. I believe it really
will be manageable: that eating normal food, laughing and being carefree will
increase; that dose, tears and fights will decrease; and that we’ll all get to
sit around, look at the pictures of the piles of nuts they used to eat framed
next to their Medic-ID bracelet, and marvel. That’s my crystal ball and I’m
sticking to it.
