Joining The Club

We were in the car, driving to the airport. An adventure lay ahead- New Orleans and then a visit with my oldest friend in Mississippi. Just Mommy and Fhizzy Whig! Then it happened. Her tooth wiggled for the first time.

She's been waiting for this moment since her Big Sister lost her first tooth 2.5 years ago. EVERYONE else in Kindergarten (except half the kids I named), have already lost a tooth.

She was more excited about her wiggly tooth than she was about beignets.

Cut to two weeks later and its Thanksgiving Break. The sisters are spending the week sleeping together in N's room. They are inseparable. I'm waiting for them to finish getting ready so I can do the tuck in when they scream simultaneously, "IT CAME OUT!!!!" N had yanked out Fhizzy Whig's tooth!

Finally, she was a member of The Club.

We all scream and dance and eventually decide that they need to go to sleep so that the Tooth Fairy can visit. They are tucked in and I'm reading them their good night poem. I look up at N and her face is red. She burps. You okay? Fine. Just a burp. Then she throws up everywhere.

It's an hour and half after her treatment dose but she had thrown up right after treatment once this week and I'm getting worried. Like the other time, she was very full and barely able to get it down. This was an hour and half later though. Why was she throwing up this time?

More importantly, why does she never seem to get to the bathroom when she throws up?!?!

Fhizzy Whig stays put and I whisk N into the bathroom. I throw towels on the floor and get Fhizzy Whig into her room. The Hubs comes up from the basement and then the smell knocks me out and I'm sick. N is in the shower, crying. Clean up ensues.

I glance in at Fhizzy Whig sitting on her top bunk. Her damp hair is stuck to her little face, she's clutching her stuffed dog to her chest and sobbing. I go in to reassure her and her face tells me that she's utterly heartbroken. She had been SO happy. She had finally lost a tooth. Her sister had been as excited as she was and she was finally a part of The Club. Now, its late and everyone is running around cleaning up vomit and trying to make N feel better.

It was all about her for once and now it was all about N again.

She didnt say that though. She was sad for her sister. She was sad for what happened. She didnt insist that it be all about her.

N said she was scared and wanted to sleep with us instead of in Fhizzy Whigs room. N's room was still in hazmat condition so that wasn't an option. This was crushing. Fhiz understood though. She sobbed but told N she didnt want her to feel scared.

We told N that maybe her sister needed her more than she needed us right then.

Now, everyone is crying and trying to do the right thing. N goes and climbs into the bottom bunk but is still crying. She's scared. Fhizzy Whig's big night is ruined no matter what N does. Fhizzy Whig tells her that she should do whatever she needs to do and that she'll be okay.

Each of them is looking out for the other. Neither are crying for themselves. My Mama heart is sad but proud.

I sigh and agree to pull out the trundle and sleep in there. If they can both do what the other needs, surely the grown up in the situation can too. Everyone (except me) is thrilled now. Everyone can sleep now. Fhizzy Whig has N and N has me.

Somehow, the Tooth Fairy got to her pillow with all three of us in there. 

Week 24- Holding Steady

For the past 4 weeks, N has been on her "maintenance dose."

Huh?

That's the quantity of her allergens that she needs to consume daily. So, she no longer goes up in quantities or "updoses" every two weeks. For N and this trial, that means she is at 4,000mg combined or 2,000mg of egg and 2,000mg of almond. That's a lot more than the 2.5mg she reacted at in the spring when she went through her challenge (remember this?).

The drug (Xolair) takes three'ish months to wear off and she had her final shot eight weeks ago. About two weeks ago, I saw N really start to emerge from the fog brought on by the drug. Her energy and cognition returned. Based on how exhausted I am, She Is Back! In a few weeks I will probably be correcting myself and thinking, "Heh, now she is really back."
 
There have been some feelings. Coming down from the stress of trying (and sometimes failing) to keep a highly anaphylactic child safe for over 7 years leaves a few bruises. I wont speak for the scars she's been left with but we're working on that too.

There is a lot of re-training we need to do and although N can't eat anything she is allergic to outside of her daily dose, we have started having eggs and almonds in the house to normalize it. In 12 weeks it is very likely that she will be able to eat anything and everything, regardless of its ingredients. We realized it would be too odd to go from lockdown in the house to making scrambled eggs for breakfast. So, we are easing into it.

It's weird. It's really, really weird. I shake a little when I put almonds in my smoothie or throw an egg in my salad. Big brown eyes have glared at the other plates at the table. She's Ms. Resilient though so she takes a deep breath and we talk about how weird it is. How exciting it is. How scary it is. How amazing it is. How daunting it is. Then I drink my smoothie and act as normal as possible.

Doo-di-doo. Just drinking a smoothie that would have killed my child 6 months ago. Doo-di-doo.

And the pan I used to cook the egg? It's the cleanest pan in the northern hemisphere. I'm not totally *there* yet. Baby steps, people. Baby steps.

We will take a quick day trip to the clinic on Thursday because her blood and skin need to make their contribution to the trial.  In and out of California in a day. In mid- January she'll do her big challenges. We'll see if the protocol has eliminated her allergic response entirely or if she can only tolerate her daily dose but still needs to avoid her allergens outside of that. The latter is worst case scenario and that is miles ahead of where we started so really, we can't go wrong. The world is so much safer for her than it was when we took a deep breath and jumped into this trial.

We'll take whatever we get. See you Thursday, California.

Desperately Seeking A Dull Moment

Here in the Rockies, the aspen trees are at their peak glory. This time of year its like rivers of gold are running down our mountains. The sky is so blue it makes your heart ache. A few hours out in this wild world will settle your frazzled head. We opted to head into the mountains and push our reset buttons.

So, the Hubs was getting his haircut and picking up sandwhiches. I was packing us up for the hike, feeding little girls lunch and giving N her treatment dose (currently 3,000 mg of her allergens combined) before we headed for the hills.

Rush, rush, rush before we reset, reset, reset.

Then N threw up. She was upstairs and she called out to me with a loud and shaky voice. I ran up the stairs and she continued to throw up. She was really afraid, excessive vomitting is a symptom of anaphylaxis. I asked her if she could breathe okay and if her throat or mouth felt funny. She said she wasn't having any of those symptoms so I turned away for a second. I called Lil' Bit to me and quietly asked her to hurry and get my phone and the epipen.

N continued to throw up. Everywhere. To sum it up, none got inside the actual toilet and the Hubs had to pull out a ladder to clean some of it up. Good enough imagery for you? Me too.

I texted the Hubs
Me: come home, N sick
Him: ok. do you still want me to pick up sandwhiches?
Me; no,vomit pouring down walls

Who said that kids kill the romance?!

Anyway, back to the exorcism scene on our second floor.

She was okay. I didn't need to use the epipen because she finished and had no other symptoms. I called the emergency number for the SNP Allergy Clinic and we jointly determined that she was just over full. Her tummy didn't ache before she got sick. Her breathing was fine. She had a big lunch, a green smoothie and then 3,000mg of her allergens mixed with whole milk pudding.

I feel sick just thinking about that much food. 

Lil' Bit really wanted to be with her sister and help but I didn't let her because
1) There was a path of towels through the upstairs and it would be too much for her if she saw how sick N had been and,
2) There was still a chance I was going to be jabbing an epipen into a thigh and Lil' Bit was scared enough.

Since she couldnt get to her sister, she sat under the balcony so her sister could hear her and she tended to N's lovey- Sheepie. She knew Sheepie wanted to be with N but couldnt get to her so she wrapped him in a blanket, read books to him and soothed him. She kept N updated with a continuous monologue that calmed N down better than I could. It calmed all of us down.

Sisters are kind of awesome.

The trial has gone so well for her and this little bump in the road was ugly but ultimately small (except in volume). Still, we had to go to a half dose the next day. Yesterday we went back to a full dose with no symptoms, confirming that it was just an overfull 7 year old tummy that emptied itself and not an allergic response. There were a few tears before hand but she did what she does and faced it with courage.

We got up to those rivers of gold the next day. We ended up not having to rush because everything was ready from the day before and nothing else was on the schedule until the evening. The girls splashed in snowmelt and appropriately oooh'ed and awe'd at the majesty of nature (and my prompts). They hiked with little legs up steep trails and fell asleep soundly after watching the lunar eclipse.

Not all not-so-dull-moments are created equal. 

Traveling without getting intimate with the local ER

I already waxed on and on about how much I love to travel. Now, the How To.

This is going to vary greatly depending on what the food allergies are and how severe they are.

If the allergens you need to avoid include ingredients (milk, egg, wheat, etc) vs just treenuts and/or peanuts then your travel is going to look different. Avoiding a nut is easier than avoiding a drop of milk.

Heading overseas with someone who is prone to anaphylaxis? If your allergen is lurking everywhere, making restaurants and street food off limits with the allergic person (but you really, really want to go!), this is what we have learned:

1) The internet is your very best friend. Use it to plan, plan, plan. Used to flying by the seat of your pants? You might need to alter a few things about how you travel for now.

2) Find a place to stay with a kitchen. The internet has again proven itself to be your soul mate. You can find a place to rent via AirBnB, VRBO, Tripadvisor, etc.  that will have reviews and a kitchen. Hostels usually have kitchens too and many have family rooms so you'll have privacy. You might be groaning about having to cook while you travel. Instead, focus on the fact that you get to travel and that this is just part of your reality. It might not be fun to cook while you're on vacay but at least you're not watching TV and going to the mall.

3) Pack a suitcase with food. I know, I know. But trust me, it's worth it. Plan out each meal for each day. Find out if there is a grocery store nearby to buy produce and meat. Pack extra food in case there is some kind of travel bump. Put a note in English and the local language in the suitcase (politely) explaining why its important not to steal this food. Also pack containers (thermos, lunchbox, baggies, etc) to bring food on outings. I pack food that N doesn't usually get to eat at home so that she can have fun eating. Out of respect, I never order food she would order if it was safe. That's just good manners, in my opinion.

4) Be prepared for the airline to lose that essential suitcase. When we went to Belize last year, I had enough food for 2 full days in my carry on and travel insurance on two of our tickets. If they lost our bag (which they did of course), I could feed N for two days without stress and if it didnt arrive then I would fly us home and leave Lil'Bit and Andy to snorkel without us. Luckily we had our bag after a few hours and didn't need to abandon ship. Like climbing mountains though, don't get so focused on the summit that you make bad decisions. Be prepared to turn around if conditions change.

5) Bring a lot of wipes. When you get on the airplane, wipe down EVERYTHING the allergic person might touch. From experience I can tell you that giving a child an epipen is petrifying. I personally have no intention of finding out how much worse the experience is at 30K feet. Wipe, wipe, wipe! Some airlines will let you do a medical pre-board so that you can wipe, wipe, wipe in (relative) peace.

6) Pack a lot of epinephrine. We travel overseas with six pens, steroids and an inhaler.

7) Know how to get the Eff' Out of Dodge. Have a plan on how to evacuate should an accident happen. Bridging cultural gaps does not include trying to explain that you're not comfortable with a used needle.

8) Carry cards with the allergies and required treatment translated into the language(s) where you are going. Make sure they are laminated. Make sure you know how to read the allergens various names in every language you'll have to function in.

9) Have fun. I know it all sounds really scary and stressful after reading this but trust me, you'll still have an incredible experience and adventure. I've watched my girls get out of their comfort zones. Ive stood by while they looked past another childs poverty and saw just the freedom that child has compared to them. They've grilled me with questions about history and religion as we walk out of historical cathedrals and through caves. At 5 and 7yo, it drives them to ask questions they would never have asked otherwise. They've jumped off a boat, into shark infested waters because the glimpse of the reef was too tempting not to snorkel. These trips connect them to the world outside of their bubble. It's worth the 10 minutes it took to make and pack a safe lunch.

“Travel is fatal to prejudice, bigotry, and narrow-mindedness.”

Thank you, Mark Twain. I couldn't agree more.

The first time I ever flew away from the US was one of the most defining events of my life. It was the 1990's. I was in college and my (totally unreliable) room mate and I had planned to head to Europe for the summer. I picked up extra shifts in the bar and the lab. I picked up a research project to do in Spain and that breathed some life into my suffocating credit card.

I spent hours researching backpacks, small towns and train schedules- before there was the internet. I had paper tickets for planes and trains in hand.

She (of course) bailed out and assumed I would too because what 20 year old girl goes to Europe alone? I wrote a check for the summers rent, put on an overpacked backpack and boarded an Air India flight bound for London.

I have never, ever been the same.

That summer I fended off an attempted rape in a hostel in Lyon, France*. I slept on the floor of a bus in the north of Spain and experienced a riot when a protest got out of hand. I had to give a report to the US military because the cute African American Navy Boys we were walking around with in San Raphael in the south of France were attacked by members of the racist National Front.

I kind of left out those details when I made my weekly calls (with a calling card! from a pay phone!) to my Dad.

More importantly, I stood in front of the Louvre and danced at midnight. I wandered Roman ruins in the dark with only the moon to light my way and breathed in the stories I would never know. I figured out bus and train schedules in several languages. I saw a lot of art and a lot of cathedrals. It never got old. I arrived on a Sunday in a small town in Spain and no restaurants or shops were open. So, I sat down with a family I had never met and spoke spanish and ate tapas until 2AM with a castle 50 feet away. I made friends at every turn. Western History, the Great Wars and the reality of it came into view for me with all of its twists and turns. I started to pick up newspapers and read them with my new eyes. It changed the course of my life.

I also learned that I was an incredibly capable person. I was so glad that my room mate had stayed behind because this adventure was completely mine.

I have since had the extraordinary privilege of jumping across many oceans on many occasions- by myself and with the love of my life. I have lived and worked in another country and that has changed how I live and work here. When I sat there, massively pregnant and fantasized about the world we would show our Bugaboo, Pad Thai in the northern Thailand rainforest came to mind. Croissants outside of Notre Dame! Bike rides to castles! Hikes through ruins!

Well, things havent gone exactly as planned while I was pregnant. I know, shocking, right?

It can be tedious to travel with young children. I think you should do it anyway. It's okay for things to be hard. It will be worth it. You don't need to cross oceans, just head somewhere that isn't right where you are. Lets be honest, going from Palo Alto to Alabama should require a passport. Take them to a National Park. Take them to a city. Just take them.

It can be petrifying and exhausting to travel with a young child who has severe food allergies. It is even worse when one of those allergies is perhaps the most common ingredient in food around the world. Eggs.

We have figured a few things out though. I'll fill you in.




*In case you were wondering if you and your daughter should take a self defense class, the "attempted" part of this story is why I think you should. The (disgustingly misogynistic) French police threatened to charge me because the attempted rapist was apparently in a lot of pain. Ooopss. I also learned to keep the American consulate number close at hand in case the (disgustingly misogynistic) French Police behave badly.

This is what is different

Ice cream shops have a mythical status in most kids lives. Magic happens in the hands of those scoopers. There is one place in Boulder where the ice cream does not have eggs.  However, several flavors have eggs and almonds so when we stop for a cone, the (lovely) staff disinfects a scooper and heads into the hard freezer for a fresh bin of ice cream that hasn't been cross contaminated. Having spent a summer working at Ben and Jerry's in college, I am fully aware of the workout they are getting in the deep freezer.

It takes extra time and usually embarrasses her - other people have to wait and she stands out because of her allergies (and not her awesomeness). Because not one of those college kids has ever done anything but happily oblige when they've seen her big brown eyes, our bill usually includes my 50% grateful gratuity. 

Then I hold my breath while she eats her ice cream and I act normal. You see, that's what I've done. I've acted normal. I never felt normal. I felt really, really scared. I was always scared. So was she. There was constant fear, everywhere we went.

Last week, we went in and just ordered the ice cream she wanted. We read the ingredients and with no special treatment, we sat in the hot sun and chased our melting ice cream down the cones. Just like everyone else.

We only eat in a few restaurants with her. Three restaurant- epi-pen-needed- accidents will do that to you. If we eat somewhere else, we pack her food. That was fine until her pre-tween (is that a thing now?) self started sinking into her long body because of the unwanted attention. When we went to the dinner theater with friends, she waited until the lights went down to pull out her thermos.

Dammit.

But now? I breathe. I'm not always scared. Her world is profoundly safer. Today she ate 300mg of her allergens combined. She does that every day (until Thursday when she starts eating 600mg). That's more than might be on your hands after your lunch so go ahead and give her a hug! Hell, kiss her on the cheek! She'll be fine.

We went to the Rocky Mountain Chocolate Factory. We never went there because their chocolate is cross contaminated with almonds. She sucked down four chocolate coins while strolling along the river. We still need to check ingredients but if you flip her burger and an egg with the same spatula, we wont even know it. We wont be leaving the ER four hours later.

She was petrified but she pushed her way through a rib at a random restaurant. She couldn't eat more than that but that rib, that one rib was glorious and took profound courage. I wonder what bystanders thought while I was pep talking her in the middle of the BBQ joint off of I-70? 

This morning, both girls were driving me up the wall. So? I sent them to the park. Since the dawn of the suburban reality, parents have been kicking kids out to the park to preserve their (lingering) sanity. Now, my sanity stands a (limited) chance. I didn't go with them (I did send the walkie- talkie in case someone needed stitches). Spilled bag of almonds next to the slide? Toddler with a muffin? No worries.

We aren't *there* yet but this place is safer than the world has been since she was four months old. I go looking inside of me for the fear but its gone. There is only a scar. Even if we never go further than this, we can all exhale. Touch is no longer dangerous. Your car doesn't need to be vacuumed before she gets in. We meet new neighbors and don't even mention her allergies.

The freedom and possibilities are making me downright giddy. 

The trial ends at 36 weeks. She hits her maintenance dose at 20 weeks. We are about to start week 14. Who wants to have us over for dinner in October?

The A Team

The whole team can't play every game but some games need the whole crew on board. Week 8 required all four of us.

While this is mostly about N, it's also about the whole family. She has to do this herself but she has a support crew and we are pretty invested.

Little Boo is 5 years old. She'll start Kindergarten next month. She's not at an age where you would expect a lot of selflessness but this little girl of mine shined as her sisters cheerleader. She made a sign to hang at the foot of the bed "I want to see you be brave." She sat with her. She insisted she make the ice runs because eating ice helped N's itchy mouth. She set up N's doll and made sure Sheepie was within reach. She kept telling N that she could do this. When N started to throw up, she didn't run away from her side but instead tried to help. Not once in those four intense hours did she demand anyone's attention or act out in a way to pull the focus on to her.




She's learning a lot right now that Kindergarten won't be able to teach her.

And finally, Rockstar Husband was with us. I knew there would be a lot of information on handling her daily treatments and that this visit would require all of our attention and our different questions needed to be asked. I knew she needed him and so did I. Our marriage is a happy one. I'm not sure what these days would be like if it wasn't. He came so we could all be together during the hard part but I was surprised by how important it was to be together when we realized that this was something to celebrate, not just endure. You can't just hold each other up when things are dark, you need to clink that glass of champagne (or two glasses. No judging allowed!) together too.

So we came out of the clinic, blinked in the sunlight and walked to the park, all together. We flew home and we all cheered her on through her first home dose. We all exhaled together when her mouth didn't even itch.

We popped the champagne, together.




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This just got real

In this trial, Week 8 is a big deal. After 8 weeks of shots (at either two or four week intervals depending on your size), you begin the Oral Immunotherapy. You begin teaching the immune system that the food you're eating isn't dangerous and it doesn't need to attack to the point of death.

Here we are at Week 8 and it is time for the immune system to learn that it's just food and it needs to calm the eff' down. Starting now.

The food challenges leading up to starting the trial taught us that N reacts at 5mg of her allergens. Basically, two crumbs. In case you thought I was Mayor of Crazy Town when I insisted your child wash their hands after eating, think of how little it takes to send my 7year olds blood pressure plummeting and throat swelling shut. Two egg crumbs. Two almond crumbs. Just think about that for a second.

At Week 8, they started her on 5mg combined. That is 2.5 mg of both of her allergens. The nerves going into this appointment were epic. So was the excitement.

Although they don't yet confirm if she has the drug Xolair or the placebo, it's pretty obvious from the first bite. The Xolair works to minimize the severity of the reaction while the immune system is being schooled on how to properly interact with the allergenic foods. She ate her first 5mg combined and had no more that a mildly itchy mouth.

Holy Freaking Cow. We all gave a quiet exhale.

Then, they fed my Boo FIFTY MILLIGRAMS COMBINED!!! This is what that much looks like

I felt hope being replaced by promise. She ate that and felt fine. FINE! As in, not dying. I didn't cry. I had a few tearless sobs but it was almost too much to even cry at. Crying wouldn't suffice.

Then came 150mg. This proved to be too much. Her eyes turned red, her nose was gushing and she started moaning that her stomach hurt. The Doctor acted normal while eyeballing her blood pressure and heart rate. We gave her a bin and she started to throw up.

You might be afraid that this is going somewhere bleak but it's not. Because she only threw up once and then felt better. Her blood pressure never dropped and her airways remained open.

They gave her some Zyrtec to make her comfortable and some Pepcid for her stomach. Her team was well oiled and never dropped a ball. She was safe but shaken.

Her tears followed and exclamations went from an excited repetition of "I can't believe this is happening," to "I hate this! This is the worst day ever!" As I wiped her face and rubbed her back I brought her back to the positives. I reminded her of what was accomplished and how okay she felt before the 150. I reminded her to focus on Paris. We breathed together, eyes locked. She smiled through her tears. She turned herself around.

Still, she was relieved to be done with the ordeal of the day.

They sent us home for two weeks with a daily dose of 50mg combined. In two weeks we'll go back and they'll increase her dose. We'll do this until N can eat enough egg and almond dust to safely live in the world without it wiped down. When she can sit down in any restaurant and order food. When she can go on a play date without being prepared that the muffin left on the counter could lead an ambulance ride. She can boldly head into her world without fear that she stepped in a dropped ice cream cone and if she touches her shoe, it could end her life. When the nail tech screws up and uses almond oil she won't be rushed into a sink and scrubbed down.

I know it will become normal but giving the daily dose is going to take everything we all have. There won't be doctors and nurses chatting casually as they glance at her oxygen saturation. There will be us. I will have to keep her body quiet for two hours after she eats it because a raised body temperature can increase a reactions severity. You know, because nothing say two hours of calm like a 7 year old.

As most parents know, being the face of calm in a crisis or potential crisis is in the job description. If a hint of fear passes over my face, her anxiety doubles. I have to fake it. I have to fake my calm. 

But, I don't feel calm. I'm petrified.

I don't want to do this. I just want her miraculously cured. When she tells me with big eyes that she wants to have an easier path, it takes everything not to bury my head with hers and cry about the unfairness of life.

Since that is not an option, I have to put on my brave face so she knows what one looks like. I have to wrap myself around her and give her comfort, not extract it. I have to be her confidence for the moments she stumbles.

She has made this choice and is staring down her gravest fears. She is putting herself through fear and discomfort so that the quality of her life can improve. She has shown her family who she is inside and we are all more than a little inspired. We're in awe.

Here we go! Game on!


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Francophile

At a certain point in a marathon, your body and mind might try to convince you that a latte and the NY Times is a much more sensible way to spend your morning. So, you dig deep. You might have a bag of mental tricks. You might envision the finish line and that thrill of accomplishment. You've got a head game to get you through the rough part.

Or, you might run into a coffee shop and start that more sensible morning.

N has been a budding Francophile ever since Rockstar Husband and I celebrated our tenth wedding anniversary in Paris, leaving both Boo's with their fabulous Aunt. She understood that Paris is not a safe place for someone who is severely allergic to eggs. If it was just almonds/nuts, I would have stowed her away with us but eggs are too hard to avoid in France. Well, they are hard to avoid in most places but let's not get intimate with Frances emergency medical system.

Paris became a goal for her. It's been a dream for three years. She earned the elementary schools French award this year. Her kindle is full of Paris based stories. The current life plan is for her and Little Boo to become marine biologists based in France with a spa and clothing store they run for fun on the side of their restaurant.

Sounds like a plan to me.

Knowing that she would need a finish line goal in her pocket to get her through this, I asked her what her dream food was to focus on. She was quite clear when she told me she wanted eggy-crepes. In Paris.

Okay, kiddo. You see this thing through and we will celebrate in Paris.

When the fear starts icing up her veins, we head to Paris in our minds. We are at the top of the Eiffel Tower. We are on the carasoul. We are buying flowers in the market and eating chocolate croissants that are still warm. We are free of fear of food. We are living fully.




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Week 2

Two weeks after her first shot, its raining every day so there is no pollen floating around the air.

What on earth does that have to do with a medical trial for food allergies? Well, the drug Xolair would diminish all of her allergic reactions, not just to food. We don't know if she got the placebo or the drug so we are playing detective. I am actively trying to *unblind* this study.

She did sneeze earlier. I wonder if it was the cat that was in our front yard or just a tickle in her nose?

Whenever momentous things happen in my life, I am surprised that every other thing does not stand still. Its like being in a river and trying to stand up but but your feet can't quite get a grip because of the current. This thing is taking all of your attention but around you, life keeps moving forward. I have found this to be true when its good or bad coming at you. So many times I've wanted to yell "TIME OUT!"

Two weeks ago, at Week Zero, I wanted just thirty seconds. Just thirty seconds to cry, laugh and hold on so that I could put the hugeness of all of this into a place. I wanted ten seconds with Andy so we could just take a deep breath together, then face our daughter and the world. But, he was in Colorado and I was in California. The water moved us forward without pause. Papers were signed, details covered (give her the dose on a full stomach, no activity or warm baths for two hours, no exercise, no ibuprofen...), risks discussed. During this, movies played, texts arrived, painters called, school work needed to get done. Life is relentless.

They gave her a shot. Because Xolair is thick, the shot takes a few seconds. They have these fun buzzy bee vibrators that take the edge off of the shot. She took it with her usual stoicism. The placebo is thick too so I had to discard that clue.

I cried once. When Whitney the Amazing was going over the timetable and said that some of the kids hit their maintenance dose at 12 weeks, the sob I had been holding in just burst out. Twelve weeks. TWELVE WEEKS, PEOPLE! That is THREE MONTHS. It is completely possible that in THREE MONTHS,  our Bugaboo could be safe eating in any restaurant. That a kid with mayonnaise or almond butter on their sandwich could grab her hand and run out to play without sending her to the ER in an ambulance. In twelve weeks it is possible for her to just leave after school with a friend. Just go to a birthday party. Just be.

We are now at week two. At week four we go back for another shot and at week eight, N gets another shot and starts her daily dose of her allergens. She'll have to eat that every day to keep her tolerance up. She'll start at 2.5 milligrams of each, which is about a crumb. If she has the Xolair, she'll move towards maintenance quickly but if its the placebo she wont. If its the placebo she'll try to scoot forward until sixteen weeks when they'll send her back to start the protocol on Xolair.

'The trial is 36 weeks. That is basically a full term baby. Just like when you start growing a human, you start from Week 0. We are at Week 2 now.- that giddy, hopeful phase. That stage where you don't know for sure yet but you're hoping and you're trying because this thing you want is so huge. So you gestate hope for a few weeks until you know.

Don't hold your breath

When you're eating one of your allergens in a food challenge and everyone is trying to act normal (while they are actually closely monitoring you), don't hold your breath. It makes your Mom go really pale.

She's totally fine. She came in nervous but with the eye of the tiger, stayed zen through her blood test and dove in to her first food challenge.

Her first challenge was (clearly) the placebo. She called it after one bite and she exhaled deeply. Apparently she was holding that breath in pretty tight. She went through all seven doses and felt fine.

Then, she waited for two hours. She had (another) blood test.

Her second one was (clearly) one of her allergens. She reacted immediately. She seemed to be bordering on a more serious reaction but it stayed in the safe range. They hover and monitor without making anyone nervous. They notice if you hold your breath because you feel like you might be sick. They notice if your eyes are blood shot. They notice when you start trembling with fear and they take care of your feelings too.

She got scared but kept it together. She quietly cried and said she didn't want to go through this. For the millionth time since this whirlwind started, my heart felt like it was in tiny bits.

But she's okay now. She's hanging out with her new friends and watching Frozen (again).

And guess what? She's *probably* in. She needed another blood test to confirm her total IgE level. If it's where it was in December, she starts the shots on Friday.

Seriously. This is real. This is really happening. I'm sitting in a room right now with three kids who are here for their "up dose" of their allergens. These brave kids are eating quantities of nuts that would have killed them months ago.

I'm trying really hard not to hold my breath right now.



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What a day we had

She was wide awake at 4:00am. I handed over her kindle and she read a Thea Stilton book. She kept nudging me and coughing and making as much noise as she could. She knew I wasn't going to yell at her and she certainly wasn't going to sit there alone. I nuzzled her, groaned and made some tea. She finished her book and I read the news.

Finally, it was time to go. Fake smile plastered on my exhausted and petrified face, we got into the car. She watches my face to see if she should worry. So, I smiled and she giggled and said "good morning, California!" Then she squeezed my hand so hard I had to hold my breath.

This was looking like a long day.

We went into a room with two other families & two new friends were quickly made. They dove in to color together and eventually minecraft appeared. Still, N listened very carefully to everything the study coordinator (Whitney the Fabulous!) said.

She took a deep breath and signed her consent form. She hesitated but she signed.





They pricked all three girls backs. Yep, still allergic.





They took six vials of blood. The phlebotomist (Maya the Magical) might actually be a magician because N didn't flinch. Maya's smile gushed with empathy, mine with gratitude. It was starting to take a lot of self control to not hug everyone.

Weight, height (good grief, you're how old? You're very tall!). Breathing tests.

One new friend went home then because her cold kept her from clearing the breathing test.

Then, they brought in the pudding that contained either one of her allergens or a placebo flour. She had to eat it blind, against everything she knows to do to keep herself safe. She didn't want to do it. She was heading towards panic and she wanted to go home.

But she sat down and they smeared it on her lips. Unlike other food challenges, they want to encourage an oral response because they can stop the challenge as soon as they see anything- a hive, swelling-anything. They let it sit on her lips for a few seconds and then have her lick it off. That took everything she had, to actively lick it off her lips.

Her mouth itched right away. So did her friends. They separated them because they were feeding off each other's symptoms. N did not want to eat more and she was scared.

Whitney the Fabulous started talking about nonsense and wouldn't stop. N would not smile or laugh and her body was as rigid as a steel pole. She wanted her epipen. Her mouth itched and these fools weren't stopping it. Whitney kept talking about nothing and everything. N glared at us and then agreed to her second dose.

She demanded that she not be left alone at all. She demanded that a doctor or nurse stay in her room.

Her mouth itched more. She drank water, it helped. We went for a walk in the hall and met the other Doctors, nurses and MA's. The hives showed up and they called it. She didn't need to eat any more. She was done. They monitored her breathing and blood pressure then gave her some Benadryl for the hives.

She was done for the day. She had done it. They said they would keep her safe and they did. They had earned her trust.

She went looking for her new friend and they snuggled up and watched Frozen together. Giddy with their courage, they talked loudly and sang boldly. The medical staff kept joining in to sing. Apparently, Frozen is on a lot in the children's food allergy clinic.

We left after two more hours and walked to a nearby park. N is usually wild but she played quietly and pulled out some paper to write a poem about sandboxes.

We stayed there for a few hours, her not demanding my attention but quietly playing in the sand. Large redwoods shaded us and we both let the fear wash through us. I searched for flights for the next week and tried not to visibly flinch as I entered my credit card number.

She's feeling the pride in her strength and owning it as her choice. Having to sign separate consent forms than me gave her ownership. Having a reaction that was controlled and safely stopped without an epipen showed her that these aren't a bunch of hacks but highly competent food allergy experts.

Or as she says, they are the Best In The Whole Wide World. So, we'll see them all again next week. Two more challenges and then we'll get a spot or not.

Tomorrow though, we're just going to go be tourists in San Francisco. In a year we might be able to go be tourists, stop in Chinatown and just order food to eat. My backpack might not be full of a full days food for her. I can't even wrap my brain around what that will be like.




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Stanford or bust!

The email came out of nowhere. I had stopped expecting it. We hadn't heard anything since December when we scrambled to get a blood test and send the results after they first contacted us.

Then radio silence for FOUR months.

According to The Email, N passed the first round of screening and would be seen on Thursday morning at 8:30 am for the next level of screening. At Stanford.

Did I mention that we just bought a house and are scrambling to get that place ready and to get our (cluttered) house on the market? Our calendar is overflowing with end of year performances, celebrations and ceremonies. So, not the ideal time to add in twice monthly trips to Palo Alto but one does not look a gift horse in the mouth. One smiles and asks for their list of recommended hotels.

So, we scrambled. We booked flights, arranged a ride to piano for Izzie, moved things here and there. Five days later, N is watching Harry Potter on her kindle while flight attendants are preparing for take off.

On our way to the airport, I was navigating the endless construction on the highway connecting Boulder to Denver. I remembered being in the back of an ambulance with N, on a different stretch of that highway. The construction slowing our progress, the paramedic prepping another round of epinephrine. Her big brown eyes locked on me, her anchor. The privilege of being this brave girls anchor made me cry again today while she sang her little heart out to Kidz Bop in the back seat.

The clinical trial will test if the drug Xolair speeds up the process of desensitizing through oral immunotherapy. If you just went "huh?!?" Then go here: http://stanmed.stanford.edu/2014fall/i-can-eat-it.html

We won't know if N is getting the xolair or the placebo (double blind fun!) but she will be getting the oral immunotherapy treatment. That's right, The Treatment that's changing lives.

First though, my mighty 7 year old will go through two allergic reactions, while in the care of the revered and brilliant Dr. Nadeau at the Sean N. Parker Center for Allergy Research. This isn't an abstract thing for her. She's been through several anaphylactic reactions. They will have plenty of monitors on her tomorrow so that as soon as a reaction begins, they can stop it. They can measure what she can tolerate. There is still a chance of anaphylaxis but if you're going to need a dose of epinephrine, you want to get it here.

It's a lot for a little girl. She's petrified. She picked out a dress she doesn't mind throwing up on. There hasn't been a lot of sleep. She really wants her sister here. I'm spent but smiling and trying to get us through these next few days emotionally in tact.

If her allergic reactions meet the trials requirements, she will soon begin desensitizing. We will head into tomorrow with as much cautious optimism I can muster.


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Who is this lady anyway?

I live in Boulder, Colorado in the western part of the United States. If you know Boulder, let me just say that I love being near the mountains, 300 days of sunshine and being able to ride my bike everywhere.

Boulder also drives me completely batty.

I am the mother to two special little snowflakes who can do no wrong and are absolutely perfect. They slept through the night before they were even born and have never shamed me in public or left a natural disaster in their wake as they left a room. It's a result of my perfect parenting.

Hopefully it's apparent that I am very sarcastic.

One of my precious snowflakes also has severe food allergies. I've learned more than I want to know about how to navigate the world with that diagnosis. It can be daunting, learning how to live with anaphylaxis just one dropped cupcake away. If you're here because of that, let's talk. It's going to be okay.

I am also married to the great love of my life. That's not sarcasm, just bragging.

There is more to me than children, husbands and food allergies. I have a masters degree in Public Affairs and have had the privilege of working with some brilliant people on river conservation, maternal health, refugee and human rights issues.

I've dipped my toes in oceans, seas, rivers, ponds and muddy puddles on 5 continents. I spend a lot of my time showing off the worlds awesomeness to my precious little snowflakes. This gets tricky with the whole anaphylaxis thing. We'll talk about this. A lot.

After the first time I watched my little Bug swell up and fight to breathe I wanted to just focus on the details, stay safe in the leaves. As a parent though, that's not an option. I have to send her bravely off into the world one day, so I am learning to see the forest through the trees. Seeing beyond the limitations her immune system tried to give her.

The forest is in view.