She had three seizures today. She maintained consciousness through them all, but her body spasmed so severely that her shoulders jerked forward and her legs kicked. Her eyes dilated wide for an instant, then shrunk as she observed it all. She told us she was scared as she watched her body behave on its own. We held her; placed our hands on the jerking limbs to try and comfort them towards sedation.

Jordan is back at CHLA today for her quarterly MRI scans. As I write this, she’s enjoying a great nap thanks to her usual propofol cocktail. She’s had some rough times over the past few weeks. While there’s no evidence of new tumor activity, the many tumors of the past have wreaked havoc on her system. She has seizures almost every day. They rarely last for more than a few minutes, but the larger ones sap her energy and make her want to nap.

I didn’t stage this one. She came down and started talking to me … and I quietly grabbed my camera. She didn’t care that I was framing her while she talked. I love this way about her. I love when she just hangs out with me.

We haven’t received the report from Jordan’s PET scan on Wednesday, but we’re also not expecting anything surprising. After a day’s rest, Jordan was back to school. She had a very busy weekend. Friday night, she performed in her class play about American History. She remembered her lines and sang with gusto. On Saturday, she carried on with my good friend Mary Ann Mooney as if they had known each other for decades.

A lead partition separated us from Jordan after the radionuclide tracer was injected. Here are the rules, Jordan. After we give you this medicine, you can’t talk. You have to lie still. Jordan squinted one eye as she often does when processing a request. This was new information. We didn’t know that she’d have to go for nearly an hour without talking or moving around. Jordan can tolerate pain that would make a Hell’s Angel cry, but going silent for a long stretch of time is a real challenge.