Free cone day!

It’s been a challenging couple of weeks since the past updose, but the clouds parted tonight and shone some light on the amazing new life we can/will have if we stay on track.

First, the past two weeks… the large nut dose has continued to be challenging to get the kids to ingest. Aviv fights us most nights, sometimes screaming at us, “I hate nuts! I hate this!” and some nights just dragging out the dose for 45 minutes, complaining the whole time. In contrast, Ari stoically crams it down (buried in chocolate pudding, hidden in banana bread, etc.), but said to me quietly a week ago, after his nightly dose, “I wish we didn’t have any more updoses. I really don’t like the dose, but I’m trying not to complain.” That followed his frustration a few days earlier, when he announced, “I can’t handle it!”  I admitted to him that there were moments that I thought the same, but then I reminded myself – and them - that we don’t have a choice… we won’t get a chance [to desensitize] like this again, so this is our only shot at changing our lives, ridding our family of these allergies, and we’re going to figure out how to do it. Plain and simple; we will not get a second chance, so no is not an option. Failing to figure out creative solutions to address the logistical challenges is also not an option, in my opinion, so we’ve stretched our brains (and the boundaries of the study’s protocol) to make things more manageable. For example, on the weekends, when we were around to watch them, we split the dose into two parts – one in the AM, and one in the PM. This helped a lot, and we’re considering exploring flex schedules during the summer (as their dose volume increases), wherein one of us would dose them in the morning (with half the dose) and go into work late (after watching them for 2 hours, then dropping them at camp), and the other parent would come home early to give the second half of the dose in the early evening. We’ve also been experimenting with different vehicles to hide the nuts in (brownies, banana bread, etc.) or dip them in (soy butter, chocolate syrup, Magic Shell, etc.) For those of you who know me well and know my usual hard line stance on sweets, you’d be shocked by the amount of chocolate I’m freely letting them have to use to mask the taste of the nuts; ‘anything to get the nuts in’ is my motto these days.

The most creative solution we’re exploring, however, has been ‘defatted nuts’ – nuts (or nut powder) that has had the fat and/or carbs extracted from them, in order to decrease the volume that needs to be ingested. It’s the nut protein that the boys need to get 4 grams of (per nut); for nuts like pecans and walnuts that are so low in protein density, the volume they need to eat to achieve the grams of protein is so high because those nuts are filled with unnecessary grams of fat and carbs. Finding ‘defatted’ nuts solves the volume (and health) problem that we’re facing. The only problem has been that such a product isn’t readily available. Note that I didn’t say impossible; just not readily available. Remember how this whole journey started, with us learning that a solution (this study) existed, and us doing everything we could to make it happen? The same thing happened this past week, when Orr went on a quest to track down information on this type of product. After following a number of leads that didn’t take him far, he found an upcoming allergy desensitization trial in Arkansas that will be using walnut protein powder. Calls to them put him in touch with the manufacturer of the protein powder, who – after a mere 10 or so calls – agreed to make (for us!) defatted nut proteins. They are currently creating the product and running tests on it that we can share with Dr. Nadeau; if it all looks good to her, we’ll be able to get and use that for the toughest nuts.

So amidst the stress of the past two weeks (how has it only been two weeks?!) of worrying that our kids weren’t going to be able to logistically meet the daily ingestion requirements (thereby jeopardizing their desensitization), have also come some amazing wins… finding solutions to the volume issue and checking off more items on the Wishing Wall: going to a birthday party and eating anything they want (Happy Birthday Elle! Eating your birthday cake made it a milestone b-day for us, too!) and going to an event at the JCC and being able to eat the food there.

Today was another big success. Today was an updose day, and all four of us were dreading it and the increase in nuts that it would bring, but it actually went very smoothly. Today was the boys’ last Xolair shot; from now on, it will be their bodies protecting themselves against their allergies, not the medication. We said goodbye to our friend the Buzzy Bee, and then dug into the new dose of 7600mg, buried deep in chocolate cupcake. 

Another family in the Xolair trial was there with their two kids, so we parents exchanged tips on which nuts were better/easier to eat, how to serve them, etc., and let the kids all talk with each other, hoping they all drew some strength from meeting other kids going through the same thing they are. Ari (surprisingly) had a very small reaction post-updose, but not enough to impact his taking the full 7600mg for the next few weeks. We also learned that Ari will probably only have two more updose appointments (Aviv will likely have one additional) before they’ll be tested and (hopefully) graduate. That graduation – in July, if everything stays on schedule - is coming up so soon and is hard to believe.

The real win today, though, came after we left the hospital. We decided to go have dinner in town, picked a restaurant from our GPS’s restaurant recommendation list… and just went. That’s it. No vetting, reviewing the menu ahead of time for safe foods, talking with the chef, wiping down the table, etc… we just went, sat down, and ordered… nothing special; just the regular food off the menu. Aviv even got to have the bread that they brought to the table, as he’s begged to do for years. We finished, left the restaurant, then had the kind of hour that I’m sure many of you have had before, but we haven’t… we just meandered around the open square in downtown Palo Alto, enjoying the sunshine, listening to live music playing, watching Aviv join the musicians and play the maracas that they handed him, and then saw a sign for ‘free cone day’ at the neighboring Haagen Dazs, SO WE WENT. We all got to pick any flavor (still confusing for the kids to have so many choices, but they’re learning) and eat the cones; the boys were ecstatic. As we sat in the open square listening to music, cones in hand, sun in our faces, we basked in the sheer joy of the spontaneity and weightlessness that we were able to experience tonight. No packed cooler bag and limits around where we could go; no uber-anxiety as the kids played and experienced/touched life… just spontaneous enjoyment. No is not an option, and moments like these will continue to motivate us.