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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