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.