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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