Summer Dream

Photo Credit: Beach Shoes by Doug8888 on Flickr

I stopped sleeping on my own about seven years ago. This confession makes me squirm. I feel a shame in it, like I’m some kind of addict coming out to the world. I became an insomniac during a particularly difficult step in Jordan’s Journey; during some of the worst regimens of chemotherapy and frequent hospitalizations. It was so long ago, it’s hard for me to remember how small she was back then. She was only seven. She still had the same fierce will of the warrior we know and love.

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Wired (Again) for Sound

The Slayer checked in to Childrens Hospital Orange County (CHOC) this morning for at least a week of tests. This was a scheduled visit. She’s working with the neurology team there to do some extensive observation of her seizures. They’ve been coming on much more frequently. As you know, we’ve tried many drug therapies. With some, she’s experienced such severe reactions that they’ve been ruled out entirely, narrowing our options. With this stay, we’re hoping to gather new data that can help the neurology team develop therapeutic options.

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An MRI Day in the Life of The Slayer

It was that time again–the time we’ve become accustomed to every 3 months. Jordan went in her for her quarterly MRI scans. It was a good day and her scans were stable; no new growth as far as we can tell. The picture above captures the essence of MRI day. It’s a lot of waiting, so we all bring devices to keep ourselves occupied. Just a few minutes after this photo was caught, however, Jordan had a very large seizure in the waiting room.

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The Root Cause

People ask me, “how do you stay so positive?” I tell them to spend an hour with The Slayer.