Melts in your mouth…

Huge day today! The updose was very successful, with both boys transitioning smoothly to 2350mg and eating real, looks-like-a-nut-feels-like-a-nut nuts today. The boys were excited all day in anticipation of starting ‘real nuts’, probably fueled by the promise of peanut M&M’s, the most visible and easily recognizable candy of all the taboo candies out there for them. Aviv was so excited about the prospect of having his first M&M, that he did a little dance in his seat the whole way down in the car, and even announced at school today that he was going to have his first nuts. While Ari has been happy to talk about this process with anyone, Aviv has been reticent; today was the first day he seemed to feel comfortable (or safe? Or excited? I’m not sure…) enough to bring up the topic on his own and share this milestone with his teachers. I’ve been concerned about how this has been affecting him emotionally, and it was a relief to see his excitement and hear him sharing proudly.

While the boys got settled in for their vitals check and began their movie du jour, Orr & I got a lesson from the SAFAR nutritionist in protein contents of different nuts, which types to use for dosing (glazed, chocolate covered, etc.), how to make the nuts palatable and measurable (raw jammed into a brownie, cooked into little muffins, etc.), and other tips for the next two weeks of dosing. We’re in a transition dose, between all powder (last time’s dose) and all nuts (next time’s updose), where they’ll have some of their nuts in a powder (that we’ll continue to mix into pudding or apple sauce), and some as actual nuts. Ari will have one and a quarter actual walnuts (plus his powder mix of hazelnut and pecan), and Aviv will have three quarters of a walnut and 2 peanuts (plus his powder mix of hazelnut, pecan and cashew). Peanuts are easy (uniform size and covered in sweet chocolate and a candy shell? Thank you, Mars Co.), but finding properly sized walnut pieces (to make sure the weight is accurate for the dose) is actually challenging, so we’ll have to figure that out quickly.

Then it was time for their dose: large quantities of pudding and apple sauce, respectively, with their powders before we turned to their cups of actual nuts. It’s funny – even though we all knew that the powder they’ve been eating for the past 2 weeks was ground nuts, it didn’t have the same visual/emotional impact as actual, whole nuts. There was a quiet moment when the four of us looked at their cups of nuts, and each other, as we absorbed the moment. Aviv turned to me and quietly told me he was scared. Me too, honey; me too! We reminded them that their bodies were getting stronger and that they could do it, and then we spooned glazed walnut pieces in to their mouths, watching nervously, curiously and excitedly as they experienced them. Neither kid loved the taste (walnuts can be a bit bitter), but ate them without issue. Then as the big finale, Aviv got to have his first peanut M&M’s. He peered into the cup to look at them, and Ari insisted on getting a close look too – this is the closest they’ve ever been to them, after all – before Aviv gobbled them up, beaming and proud.

We sighed with relief and listened with pride as the boys announced their success today to grandparents and friends on the way home. Aviv even asked that we tell his teachers tomorrow. I can hardly believe it. I remember sitting in a meeting for the SAFAR Advisory Counsel a month ago and hearing another mom tell of her daughter’s first peanut M&M that week, and getting teary, knowing how big that moment must have been for her, and also feeling that I couldn’t really imagine that/when that would occur for us.  I knew intellectually that this day would come; I’m just so stunned that it came so soon. I’ve been in contact with a few parents of kids who are in the non-Xolair trial, and they’ve had slow and steady updosing for 9ish months to get to the level we reached today in our first updose. I wonder if the wonderment of reaching each step feels as surreal, as there is more time to prepare for it and build toward it in the non-Xolair trial… sort of like having a baby, where the 40 weeks helps the baby fully form, and the parents more fully grasp how their life is about to change. It doesn’t make the wonder of having a baby enter your life any less amazing; you just have a little longer to feel the kicks, see the ultrasounds and absorb the reality. Here, we’re still trying to absorb the reality of this accelerated process; big smiles and happy shrieks of “We ate our first nuts!”, certainly helps.

A new milestone

The last two weeks – once we got past Day One and the first night’s rough reactions – were smooth sailing. Each night, the kids easily ate their dose (Ari licking the bowl clean, trying to get every bit of chocolate pudding, and Aviv, finding the apple sauce and cinnamon combination to be his favorite) with minimal to no reactions. Instead of the trauma of that first night, we’ve enjoyed the time together each evening… reading books, playing games and talking. This is truly amazing time together – mandated quiet, quality family time - that we feel blessed to have.

Tomorrow we go back to Stanford for their first updose, this time to 2350mg – almost double what they’ve had these past two weeks. I was rendered speechless on Friday when SAFAR staff contacted me to consult about this next updose, and told me that the amount of powder involved at 2350mg is so large (about half a cup), that it becomes unwieldy to mix into pudding or apple sauce, so they suggest we replace one or two of the nuts in the mixture with actual nuts. Actual nuts?! Ones that we see and hold, that we need to go to the store to buy, and keep in the house? After banning them from our house for so long, it was hard to imagine. So Ari and I went to the store this weekend to research nuts and buy some to bring with tomorrow, so that the staff could weigh them for the doses. Watching Ari interact with this new world was fascinating. He wanted to know about every nut… what were they called, what did they taste like… He wanted me to explain how the bulk food bins work, as he saw nuts in them and had always viewed them as taboo. My favorite moment was when he stood and stared in the candy aisle, and went through each brand that he knew by name as unsafe for him, confirming that he would be able to eat each of those over time. At one point he asked if he could eat the “Rick’s” candy, too. I looked confused, and he pointed to a package of Reece’s, which apparently – in the eyes of a 6 year old learning to read – is what it looks like it should sound like.

Depending on what the SAFAR team says tomorrow, we’ll likely have a combination of actual nuts and nut powder for this next round of doses. No “Rick’s” yet, Ari, but soon.

Exhaling

Just a quick update to let you know we've stopped holding our breath here, waiting to see if subsequent nights would be more like last Wednesday (scary and exhausting) or last Thursday (calm and smooth). I'm happy to report that we have had 3 nights in a row of calm, eventless dosings. Yippee! 
Ari continues to announce each evening "I love doses" (and asks if he can have an extra one, because he likes the taste of both the nuts and the chocolate pudding that the nut powder comes in), which Aviv follows with "I hate doses", like that grumpy smurf who was always trying to be contrary. He doesn't like the grittiness of the nut powder, but is going along and not fighting the dose, thankfully.
Two new wishes were put forward today for our Wishing Wall: having pizza from any pizza place and eating popcorn in a movie theater. As Ari focused on food-related wishes, Aviv quietly said that his wish was to be able to talk to G-d. Aviv's depth often renders me speechless, and even our well-earned exhale stopped for a moment after that.

Hallelujah!

I’m thrilled to say that tonight went off without a hitch! It went perfectly - no reactions, calm kids, easy dosing, dinner together as a family, playing games, reading books, doing art projects and going to bed with a smile. The revised regimen (per Dr. Nadeau last night) to pre-dose the kids with certain medications worked like a charm, and we are so so relieved. Woohoo!

Things went so smoothly that we worked together on our wishing wall project – our poster where we write all the wishes we have for things we can’t do now, but we want to do once A&A graduate from the study. Among the items that were added tonight: eating anything we want at a birthday party; visiting the Jelly Belly factory; going to sleepovers and eating anything we want; boarding an airplane together; choosing anything we want at a bakery; and going to any restaurant. The poster background may look familiar to you… it’s decorated to look like the Western Wall, in Israel, where people put notes and messages to G-d. We, too, trust that our wishes will be heard, and can’t wait to do them and check them off of our poster, one by one.

I’m not a Doctor; I just play one on TV…

Tonight was our first night giving the boys their doses on our own, without the safety and security of SAFAR’s trained professionals around to keep our kids in one piece if they begin reacting. I’m not embarrassed to say I was actually queasy on the way home tonight, in anticipation. We learned many things this evening, not the least of which is to not underestimate the power of pharmaceuticals or television.

The boys were ‘pre-dosed’ with Benadryl before we came home to help ready their systems. We arrived before 5pm and began to prep their doses. The little measured cups have their respective names and dosages on them, as the FDA now considers the nut powder to be medication; although it’s food, and not usually regulated by the FDA, because it’s being used as medicine in this context, it gets regulated like medicine. We pulled out the bin of items we might need… cell phone with Tina (our ‘go to’ physician’s assistant on this study) and Dr. Nadeau’s numbers on speed dial; Benadryl tablets; Benadryl topical gel; various nose sprays; various inhalers; a notebook to write down details of what might occur; EPI pen; Zyrtec… it’s our own mini-pharmacy. I feel like I should have to pass a licensing exam to dispense the amount of meds we have here. 

The boys began to eat their doses mixed into chocolate pudding, and we held our breath as we tried to appear calm. Ari’s cheeks quickly turned red as he eagerly slurped down the chocolate pudding, and that was the extent of his reaction. Aviv, on the other hand, finished his and immediately started to get congested, cough and show signs of impacted breathing. Some quick puffs on both of his inhalers helped to steady his breathing, and nose spray opened up his nasal passages. A few minutes later, his face started to get red and splotchy, so I gave him Benadryl and called Dr. Nadeau. As his face began to get puffy, and the redness spread all over him, we slathered him in topical Benadryl and shared our observations and actions with Dr. Nadeau. She was so calm and reassuring, told me how impressed she was that we did everything right (Yay! My OCD-like note taking and question asking pays off!) and gave us some additional pointers. Another round of Benadryl (topical and oral) later, and another call with Tina, and Aviv was under control. He still itched all over, but the rash and puffyness subsided.

Throughout all of this, we had trouble getting Aviv to sit still. He wanted to run around, was sugar’d up from the chocolate pudding and popsicle (given to cool his throat; another way to help calm his airways), and was his usual high-energy self. The problem with that is that the more active you are, the more likely your IgE reactors are to react. He sat still long enough to eat some toast (carbs are recommended to help absorb the nuts/ease potential stomach pain) and continued to be a bit crazed until we succumbed to letting them watch a movie. I don’t want every night to go that route, but we needed to pull out all tricks tonight to help stop his reaction from getting worse.

Both boys are in bed now, and Orr and I have recovered from our first unassisted night. We tiredly celebrated the fact that they each were able to eat 1250mg of nuts without a trip to the ER, and debriefed our lessons learned… more substantive food for them pre-dosing, more calming activities post-dosing, the earlier dose time is important to be able to watch them for longer afterwards, dosing is a 2 person job, we need to stock up on a lot of medication, keep interesting books/art supplies around, TV can be your friend, etc. Dr. Nadeau told us that the first few doses after moving to a higher dosage (which we did yesterday, and will do every 2 weeks) can be hard and are more likely to involve reactions; after that, the body starts to figure it out and the dosing should go smoother. Fingers crossed.

There were parts of this evening that reminded me of our first night home from the hospital after Ari was born, thinking ‘who thought it was a good idea to let the two of us novices take care of this baby on our own?!’ Even checking on Aviv as he slept tonight, leaning in close to feel him breathing, brought me back to the early days. Just as we were nervous to go at parenting without a detailed owner’s manual then, some days feel like that still. We’re breaking new ground with this study, so there definitely is no owner’s manual. What we saw tonight, though, is that we can do it. We can handle the rough moments by relying on each other, our experience, our medical team, and our resilient boys, and get through it all relatively unscathed. All of that makes tomorrow night (and the nights after that) easier.

Day One, going out with a bang!

The most important thing that I want to say about today is that it was a HUGE success. (There was a part at the end that wasn’t so fantastic, but let’s focus on the positive first…)

We walked in with relatively low expectations for the day, and were amazed to watch both boys calmly proceed through dose after dose to finally reach the maximum, which means that each kid will start their nightly treatments at 1250mg of nuts. 1250!! It’s a long way, baby, from Aviv’s significant reactions at 1.6mg and 25mg in the double blind challenges, and that is all due to the Xolair. Were we in a standard protocol study (without Xolair), getting to 1250mg would have taken us 29 weeks of nightly dosing. This significantly shortens their overall dosing period, and starts them out in a good place for graduating in mid-July. Woohoo!

After groggily leaving the house in the darkness (thanks to both an 8:30am appointment and daylight savings time), we kicked the day off bright and early with a vitals check and then the 3^rd relatively painful Xolair shot, after which Aviv announced loudly, “I need a drink!” As all medical staff eyes turned to Orr and I (with the thought, I am sure, that we must be lushes at home!), Aviv reached for his water bottle. Sigh… Another ding to the old reputation. : ) 

They then received hourly doses of their nuts (3 nuts for Ari, 5 nuts for Aviv) in increasing amounts, to see where to set the baseline. Each of their nut amounts was mixed (powder form) with something yummy to eat – chocolate pudding for Ari, and apple sauce for Aviv – and then the little cups were administered hourly. Forget the nuts for a moment; the sheer amount of chocolate pudding and apple sauce that was eaten today was a little disturbing. In order to effectively serve as vehicle and mask for the nut powder, Aviv had the equivalent of 7 or 8 cups of apple sauce today. By the last dose, I was pretty certain he was about to vomit, and not from the nuts; there’s just a limit to how much apple sauce anyone can eat in a 6 hour period, and he had reached it. Thankfully, with each round of little dose cups, Ari announced cheerfully, “I love doses!”, as he was thrilled to be able to get his hands on so much chocolate pudding. Aviv did not join in on the cheering, but wasn’t about to appear wimpy next to Ari, so he trudged forward.

At 2:30pm, after watching numerous movies (my kids think I’m VERY cool because I know the names of the characters in the Star Wars movies they’re watching) and fighting a bit (to be expected when you’re sharing a twin size hospital bed all day), they received their last dose of the day (1250mg total of their respective nuts) without any fanfare, so we waited the requisite two hours of monitoring that follows the last dose of the day, to make sure that no reaction is lurking. Mind you, the cumulative amount of nuts each kid had today (due to the multiple updosing) was 2380mg, so their bodies were filled to the brim. We waited the two hours, congratulated ourselves for reaching the maximum so smoothly, received our bags of carefully measured doses to give at home each night for the next two weeks until we return for the next updose appointment, and then left. We were so excited, and so amazed that it had gone so smoothly, that I tempted fate by sending out an email entitled “Success!” to a few people who I knew were waiting for an update. We then walked toward our car, through the beautiful blooming Stanford gardens. That’s when things took a turn…

By the time we reached the car, Aviv sounded congested and seemed a bit red. I gave him some Zyrtec and we drove off. Within 10 minutes, he face had started to puff up, he skin was starting to get splotchy and he began wheezing. I gave him another Zyrtec, called the physician’s assistant who we had just left 20 minutes earlier (who told us to come back), and we turned the car around. By the time we got back to Stanford, Aviv’s face had swelled, his skin was moving from splotchy to hives, and he was wheezing so loud that I was truly scared. I ran with him in my arms back to the SAFAR area, where I was met by the most amazing medical team a mom could hope for, equipped with oxygen and a whole host of medications. We spent the next two hours there (with a team who stayed late with us to make sure everything was ok) medicating and monitoring Aviv, as he regained his ‘Aviv-ness’, that is, as he went from limp and quiet to taking apart medical equipment, negotiating how long he needs to keep the oxygen mask going, and asking for food. Ironically, none of us believe that it was the nuts that set him off. We believe that his body was so saturated with allergens, that when he was exposed to the wave of pollens outside (which he is also allergic to), it just pushed his body over the limit. His cup was full, so to speak, and that small thing caused it to spill over. It was scary, but a great reminder of a few things.

First, we are so lucky to have such and amazing, caring medical team; second, that this is an art not a science, and we need to remember to think about their bodies holistically; and third, that we faced a significant reaction and handled it well, which means the fear of ‘what if?’ has dissipated. Giving Aviv the Zyrtec immediately helped slow the reaction, and knowing when to call for professional medical help should not be underestimated.

Everything is fine now. The boys are sleeping peacefully. We have some revised guidance about how long to watch them after each nightly dose. (It was going to be 2 hours; in light of Aviv’s reaction tonight, we’ll now get home and dose them earlier to allow for longer observation time, at least for the first week.) And more importantly, we have taken a HUGE step forward in this journey, and are that much closer to a different life.

Very blessed, and very nervous

We feel incredibly blessed. We have received many emails and good wishes today from those around us – our doctors, teachers, and friends - and I can’t tell you how grateful we are and how supported we feel in this next stage of the journey. This has been especially helpful in offsetting the nervous energy that is palpable at our house tonight. Both boys were antsy and wanted to talk at bedtime about their fears… fear of the shot, fear of the nuts. An hour after bedtime, Aviv is still tossing and turning. I tried to refocus him on a tangible light at the end of the tunnel and reminded him that we’ll be able to go into any bakery or store where he can pick out anything he wants to eat, any time. He got a big smile on his face, and then said, “But only if it’s ok to have a dessert, right?” I laughed at his never ending ability to identify loop holes. He continued, “...and only after I ask them if it has anything else I’m allergic to.” I explained that once he graduates from the study, there won’t be anything else that he’s allergic to. He reminded me that he still has environmental allergies (grass, pollen, cats, dogs, etc.), and then agreed that there wouldn’t be any of those in food products, before stopping to absorb what I was saying. I could almost hear the wheels turning in his head, trying to process the fact that he really would be able to eat anything, without fear. Finally, there is quiet in his room, and in our house, as the same wheels are turning for each of us. 

It’s show time!

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.