Since my last post, we have gone for one more round of Xolair (a pretty quick and eventless appointment) and have spent time preparing ourselves mentally for the next stage of the trial (and beyond!). On Tuesday, the rubber meets the road: we'll be down at Stanford all day for what is referred to as ‘Day One’ - day one of the ingestion phase of the trial. On Tuesday, in addition to getting another round of Xolair shots, the boys will have their starting baseline dosage determined, after which we’ll be sent home with carefully measured cups of that dosage to give them each evening. (More on that in a moment.) How do they determine the baseline? Much like the double blind food challenge days in the beginning, they are given an amount of nut powder to try out in the morning, and are given more during the day to determine how much they can handle, as the higher the starting baseline, the better (as they’ll get to their final, graduation stage quicker). The benefit of participating in the Xolair study (in contrast to the non-Xolair/standard desensitization protocol) is that it enables an almost crazy acceleration of updosing. To give you hard numbers: Aviv reacted in the double blinds at very low doses of the allergen - 1.6mg. On our first day of ingestion (Tuesday!), the team at Stanford will updose them throughout the day to try to bring them as close as they can to 1250mg. On the first day. If you're reading the numbers and thinking 'that can't be right', know that I'm thinking the same. It's hard for us to wrap our heads around. To say that I’ll be anxious is an understatement. We've been in touch with other parents who are a bit further along in the Xolair trial than we are, and they're having trouble believing it too, but they're seeing it to be the case. The real rubber will meet the road when the body weans off of the Xolair, and we see that it really has desensitized without the support of the IgE suppression, but that’s fodder for worry during another month.
In this accelerated trial, the hope and plan is that the boys will ‘graduate,’ and be deemed to not be allergic anymore, in 4 months. 4 months. 4 months to be free of all of their nut allergies. It’s truly unheard of; this is the first Xolair trial in the country for multiple allergens (meaning, treating more than one allergen at a time). We have even already scheduled out all of our appointments (hoping to stay on track) and have a “final confirmation” appointment slated for July. While that would be AMAZING, truth be told, I have doubts that it will go that smoothly. I think there’s a good chance that Ari will stay on schedule (he is being treated for 3 nuts, and his reactions during the double blind challenge were – relatively – mild), but I expect that Aviv will have a tougher road. He has 5 nuts that his body needs to be desensitized to, including one (cashew) that has proven to be a challenging one for other kids in the study to deal with. He also has a history of stronger reactions at lower levels of ingestion. I hope to my core that I’m wrong, and he sails smoothly alongside his brother, but I’m sharing my gut feeling with you on this. We actually had a beautiful moment a couple of weeks ago where we were talking with the boys about what’s coming, in particular that some parts of this next stage may be hard for them. Ari focuses a lot on the ‘after the trial’ aspects (what he’ll be able to do, etc.), and is quite talkative about the trial, but
Aviv has been quiet about what he’s thinking and feeling. He hasn’t expressed excitement; he just seems to be taking it all in, and likely holding it all in. A few weeks ago, though, in the midst of one of our discussions, he stoically announced, in these exact words, “I’m brave, and I know that even if it’s scary, I can do it.” I almost cried. Luckily, I managed to hold it together and suggest that we write that sentiment down. We added it to our gratitude tree (the tree-shaped poster we have on the wall where we place leaves with sentiments of things we’re grateful for), and look at it often.
As to our new evening routine: once the baseline is established, the fantastic team at Stanford will send us home with measured doses for each kid, that we will feed them each night. Like clockwork, the boys will receive a pre-dose Benadryl at 5pm with dinner to calm their IgE’s, and then we will be home to administer their doses at 6pm. We’ll mix the nut powder in apple sauce or pudding and make sure they eat every spec. Then we watch them like hawks for the next 2 hours (as 99% of reactions, if they’re going to occur, happen within 2 hours) for any sign of reaction, before they go to sleep at 8pm. We have instructions about how to handle any symptoms, and have contact information for our amazing doctor (Dr. Nadeau) and nursing team, whom we are supposed to call immediately upon any signs. Ideally, no or mild signs appear, and we get to enjoy 2 hours of calm (we need to keep the kids calm so as not to increase the likelihood of a reaction) time together as a family, reading books and playing games. We’ve stocked up on books and board games, and I’m actually excited about having this type of dedicated, special family time together. If more-than-mild reactions do occur, however, our blissful family time might be cut short by swift administration of medication and a trip to the ER. Let’s all send some collective good thoughts that that is not what occurs. It was one thing to have dosing/challenges occur in the heavily controlled (and professional staffed) Stanford environment; it’s another to have this done at home by 2 people who have been getting their MD’s through osmosis, and who really know very little. During this ingestion phase, we are planning to have one or both of us home each night by 6pm for the dosing/monitoring, so please don’t be offended or surprised if you don’t see us around very much in the evenings for the next 4-5 months.
Until we get the green light from Dr. Nadeau at the end of the trial, nothing changes in the safety protocols/processes that are currently in place for A&A at each of their schools. There can be no 'easing up' on safety precautions; until they are deemed to 'graduate' from the trial, nothing will change in the way they live and the level of vigilance we all have. Which brings me to them graduating… to help the boys (and us, honestly) in making all of this feel real and give us something tangible to look forward to and focus on during the tough days, we’re creating a wishing wall in our house where we can each post the things we’re excited about being able to do (or eat) when this is over (with plans to them do them!). Putting together the actual wishing wall is on our agenda for this coming week, and the boys are already starting to come up with ideas… tour the Jelly Belly factory (and be able to eat the Jelly Bellys) was the latest wish… I’ll share some of the wishes as the weeks progress.
Until then, the most immediate wish on my mind is that Tuesday goes smoothly in establishing a high baseline. Wish us luck.
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