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.

Ice, Ice, Baby

Last night, I put to bed 2 slightly anxious kids ("How much will it hurt? How long will the needle be?") before beginning my own tossing and turning through the night. By this morning, however, Ari's furrowed brow had given way to dancing eyes. "Ima! I'm excited about today!", he announced this morning. Before I could ask why, he continued, "...and I wish we could go every day!" OK- now I was really confused. He explained: "Today is the first shot, and the sooner we finish all of them, the sooner we'll be done with the treatment, so I wish we could go every day and finish sooner!"  No amount of data, experience or years can hold a candle to the pure perspective a child can offer.

So off we went today, the kids talking nonstop in the car on the way down, discussing which of them was going to look at the needle (“No way! Not me!” declared my mini-me, while Aviv proudly announced that he wanted to see it). Upon our arrival and settling in to the room (where the boys, sweetly, position themselves right next to each other in the hospital bed like two peas in a pod), we were given a stack – literally: 17 pages per child, in duplicate – of consent and disclosure forms to review and sign. All the risks of the Xolair, our obligations being in the trial, the personal information we agree to share in the name of research (ahhh... more irony), and the statement that there is absolutely no guarantee of results. As anyone who has bought a home knows, there is something very sobering about signing a big stack of legal documents. Amidst the signing away of liability, there were two parts of the packet that stood out for us… one was the titling of the study as ‘Phase 1’. Phase 1 of a clinical trial refers to the stage in which researchers test an experimental drug or treatment in a small group of people (usually 20-80) for the first time to evaluate its safety, determine a safe dosage range, and identify side effects. This was it. Our kids are a part of developing the foundation for this amazing research – so exciting, and also fraught with concerns over what is not yet known. The second part that stood out was the schedule detailing the protocol. There it was in black and white – 8 weeks of priming the body with Xolair, then oral desensitization (i.e. ingesting the allergens) for weeks 9-24 (with weeks 9-16 continuing the Xolair), then done! Another 28 weeks of follow up (so that they can monitor and collect information, making for a 52 week total), and that’s that; all wrapped up with a bow. We even have our next two appointments scheduled, including the one in which they’ll start their ingestions (March 13^th). Holy moly! That feels real!

After we finished our stacks of paperwork, the kids prepped for their shots. We strapped Buzzy to Aviv’s arm (and applied an ice pack to Ari’s) to ice the area. For anyone who has particularly un-fun shots in their future, let me tell you – icing is the way to go. Definitely do it. It numbed the area so well that the pain was minimal. Aviv’s arm almost defrosted as he insisted on asking Tina (the amazing nurse who is trained in Xolair administration) a litany of questions. (“Why does the shot have to be on the arm, not the leg? Is this the smallest needle that you have? What will it feel like? Are you sure you’re not just saying it won’t be that bad, but it really will be? Sometimes that happens…”) After the interrogation was complete (and bless Tina for her patience!), Aviv looked at the needle, braced himself, and got his shot, which only lasted 10 seconds. A&A receive a relatively low dose of the Xolair (75mg), so Tina is able to administer the thick liquid in that relatively short time; Buzzy (and the iPad, playing the Lego movie for the bazillionth time) also helped with distraction. Some of the other kids in the study with higher sensitivities than our kids receive 300mg doses, which apparently takes a looong painful time… we got off easy on this one.  Ari had no questions (knowing that Aviv tested the process first), and quietly and quickly sat for his shot, not breaking gaze from the iPad.  It went as smoothly and easily as we could have hoped for, and better than we expected. Woohoo!

We watched the boys there for 30 minutes after to make sure there were no complications. A little face flushing, but otherwise they were their usual high energy, famished selves. (Truly – the amount of food we bring, and they polish off, during these appointments is impressive.) 

One thing that was interesting today was that there was a college student at the hospital who is both in one of the trials himself (milk allergy), and who is also doing research on the emotional impacts of food allergies on families. He asked if he could talk to us, then briefly interviewed Orr and I, and then each of the kids separately. They were asked whether having allergies ever makes them nervous. Both boys said yes, and talked about how being around nuts makes them worried, so they try to walk away from them [nuts] whenever they can. I stood away from the boys during their interviews, out of sight but within earshot. I couldn’t help but feel proud at how in touch they are with their emotions and their ability to articulate how they feel, and even more committed to participating in this trial to change their reality. The interviewer also asked them who is more worried about their allergies – them or their mother. Well duh… both boys knew the answer to that obvious question. : )

In the car on the way home, Aviv fell asleep, the emotions of the day having taken a toll on him. Ari was chatty and content with how the day went, the candy treat they received afterwards for having good behavior (it’s crazy how long you can stretch out the doling out of Halloween candy!), and the fact that we had decided to leave Buzzy there with the allergy team for other kids to use during their appointments. “We did a mitzvah!” he announced, very pleased with himself, and entirely forgetting any anxiety from the day – or the hour - before. Orr and I quietly took in the fact that we’re really buckled in now. He said it feels like the beginning part of a roller coaster, where you’re strapped in, headed up the hill, where there’s no turning back and you know that the big scary stuff (that you came for!) is just up over the crest, coming very soon but in what feels like slow motion. Buzz buzz, indeed.

…

I want to take a moment to say thank you. Many of you who have emailed words of support or kept the boys in your thoughts, and many of you made me teary by making donations to the Stanford Alliance for Food Allergy Research (SAFAR) in Ari & Aviv’s name. We are so touched by your generosity, and we are so glad to hear of more support for Dr. Nadeau’s groundbreaking research that will help A&A, and so many others. There is no gift that is more meaningful to us than that. Thank you so much.

Let the treatment begin!

Tomorrow is a big day for us: it's the first shot in the boys' desensitization treatment. Everything up until now has been "pre-treatment" work (food challenges, blood & skin tests, confirmations, etc.).  Tomorrow is the first day of the actual treatment regimen, and we’re having trouble believing it’s real. We’ll go tomorrow afternoon – after what should be a normal school/work morning for us (other than our minds racing a million miles an hour!) – down to Stanford so the boys can each receive one shot of Xolair that will ‘prime’ their bodies to suppress their IgE’s during the course of the autoimmunotherapy (the ingestion portion of the treatment). During each of the first 2 months (January & February), they will receive 1 shot each, but no nuts to ingest. Somewhere around the 9^th week (we’ll have to see as it gets closer), they will begin receiving their daily dose of nuts in addition to the monthly shots. Now, this drug is not without its potential side effects, of course, some of which are strong enough that the FDA requires it to be administered in a medical facility or doctor’s office. I’m choosing not to focus on those potential side effects right now. 

It’s funny… even though we’ve known for the past month that this first shot was coming, Orr and I haven’t been able to get our heads around it. There are people we’ve wanted to contact to share the news of being admitted to these trials - including the doctors from Tel Aviv, Dallas and Portland who gave generously of their time to talk with us last year about treatment options, and whom we considered moving closer to, to enable them to treat A&A – who we felt hesitant to contact, for fear that it would make this dream bubble burst. Now it’s starting to feel real. We sat the boys down tonight to talk to them about what to expect tomorrow… if there’s anything we’ve learned in this journey is how much our kids want us to be honest and tell them everything in this process.  We got an angry earful from Ari after the unblinding of the 3 challenge nuts, when he figured out that we knew they were receiving nuts in those challenges, and hadn’t told them. Truth be told, we normally tell them everything and are very open about their medical condition, issues, steps, etc., but it was hard enough for us to cope with the fact that they would be receiving nuts during their challenge appointments without freaking out, that we didn’t want to put that upon them, as well. They like to ask questions, though, and asked us point blank what was in the challenge food they were eating. We were technically accurate in our answer (“Only the nutritionist knows for sure; not us or Dr. Nadeau…”) but intentionally left out the detail that we knew it was a nut, just not which nut. They were NOT pleased, and we have promised to be 100% forthcoming with them moving forward.  To that end, we told them tonight that the shot tomorrow will take longer than most shots they’ve received (we believe it will take 1-2 minutes to inject) as it’s a thick liquid, and that it will likely hurt. We received advice from another mom (whose daughter is in the study) to use a product called Buzzy – a funny little combo ice pack/vibrating device that you strap on to the injection spot prior to a shot to freeze and confuse the nerves. The boys are excited to try out Buzzy tomorrow, but have admitted to being a bit scared. In true form for our kids, wherein Aviv dives head first into new situations, he excitedly declared, “I want to go first! Can I get my shot first?” Luckily, that is exactly what Ari wants (that is, to watch his brother engage in any potential dangerous situation first before he’ll consider trying it), so they’re a good yin/yang for each other.

While tomorrow is a big day for us, I have to remember there will be many big days for us in this journey… after the first shot, there will be the first ingestion, then the first ‘updosing’, no doubt the first reaction, hopefully not (but potentially) the first ER visit, and finally, the ‘graduation’ and post-treatment firsts (too many to list here!). That’s a ways off, so for now, I’ll focus on this particular big day when the fears that ‘maybe we misunderstood and we aren’t really in’, will finally go away. So with the iPad, snacks and Buzzy already packed up, we’re excited to start our first of firsts tomorrow, and believe for sure that this is real.