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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