Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Tuesday, December 23, 2003

Steven is Sick :-(

Starting two weeks after we returned from Memphis, Steven suffered from radiation somnolence, a delayed effect of the craniospinal radiation that causes drowsiness, extreme at times, and loss of appetite. He was able to attend school, but was having almost daily naps in the nurse's office.

Last Thursday and Friday, for the first time since the somnolence symptoms started showing up, he was at full energy again, no naps, developing a healthy appetite, and generally looking great.

He started with nausea Saturday afternoon, worsening to vomiting on Sunday and lasting through Tuesday morning. Because everyone looks at Steven differently now, we took him to get a CT scan on Monday to rule out a neurological cause for the vomiting, but everything looked good.

For the first time since he was diagnosed, on Monday night, after having not eaten anything at all since Saturday and unable to stop vomiting, he started crying and said, "It's not fair, it's not fair, it's not fair".

He's right, it's not fair. But somehow it's just not about fairness. If life was fair, there would be no need for a facility like St. Jude. And things could be worse, the CT scan was clear, a huge relief.

Yesterday he was improved greatly, drinking again and eating. And he's back to his usual cheery self. This morning (Wednesday), he's wheezing, with croup.

We're praying that we stay well enough to make this trip, our road trip to Memphis, all 1900 miles of it.

- Kathleen

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