She was on her way out, marching purposefully down the hall. She’d been poked and prodded and she was ready to go home–so ready that she walked well ahead of her mother who was still gathering belongings in the clinic. By the time Jeanette caught up with Jordan, she found her carrying on with a tall, Hollywood-looking man.
– What kind of music do you like, he asked.
– Ella Fitzgerald.
– Oh, man. Ella Fitzgerald is awesome.
– Yeah. And Peggy Lee.
– Peggy Lee? You listen to Peggy Lee? I know guys in my band who don’t know who Peggy Lee is. Who are your parents?
And just like that, Jordan was making friends with Nikki Sixx from Motley Crue. People told her who he was, but she was far more interested in the ways he thought about jazz and its influence on rock music. Nikki was roaming the halls of Children’s Hospital to cheer on the kids. He happened to find one who was less interested in his celebrity status and more interested in chatting the nuances of music with him. A few minutes later, she started singing lines from a Maroon 5 song. He told her he knew the band and they were all pretty cool.
That’s Jordan. She mixes with celebrities as easily as she mixes with family. She isn’t the least bit aware of their fame. She’s genuinely interested in sharing everything she can. And that’s why people fall hopelessly in love with her.
It was a long day with bits of good news. Jordan’s counts are way up. Her body is equipped again to fight infection. Because her headaches have been coming on strong lately, her doctor ordered a CT, just to be sure that her shunt was functioning. We were pleased to learn that the shunt is placed perfectly and her ventricles are actually in better shape than they were several months ago. The doctor also noticed that areas of her brain show signs of calcification. He told us that this is sometimes a sign that tumor is indeed dead. The tumorous tissue can’t calcify if it’s still active, he said. If this is true, it’s good to know that Jordan has conquered some of the disease. The flip side is that the calcification could be triggering the increase in seizures and the extra headaches. We’ll know more next week when she goes in for her next MRI.
While at CHLA, Jordan had a mild seizure. She had another today. Each was less severe than the seizure I wrote about over the weekend, but each takes an emotional toll on the patient and her family. Still, how cool is it that my daughter has met Nikki Sixx from Motley Crue? I’m not worthy.