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

Monday, February 16, 2009

President's Day in Memphis

Our flight to Memphis was thankfully uneventful and on-time. We even got there in time to eat in the cafeteria, where I harassed Steven by taking pictures of him while he was eating.

The scheduling gods at St. Jude smiled down upon us this time and granted that Steven wouldn't have to have a fasting blood draw at 7 am (5 am California time), mercifully the first appointment was 9 am.

Steven and I spent 3 hours down in the Behavioral Medicine clinic participating in a study entitled, "SADHD1: Pilot Study of Primary and Secondary Attention-Deficit/Hyperactivity Disorder Among Survivors of Childhood Cancer". I fill out multiple detailed forms, and Steven more neurocognitive testing, as well as detailed interviews.

Our hope is that one day these studies reveal something useful that can be used to help the kids who've had to go through such rigorous and toxic treatments at such a young age.

Despite making progress, Steven still has a full-blown phobia about IV's. He began worrying about the IV he was going to have to get before it was even February.

But the IV is a necessity, that's how they inject the MRI contrast solution. So I start by teasing him and taking pictures, trying unsuccessfully to get him to laugh.

This time none of our familiar nurses can be found. It's been over 2 years since anyone failed in their first IV attempt, but on Monday the first attempt resulted in a blown vein.

Steven is shaking and drenched in ice cold sweat from head to toe, trying hard not to cry.

The second attempt was successful, but barely. Steven de-stressed with a little Sonic the Hedgehog.

The MRI in the new Chili's Care Center allows Steven to watch a movie. They mount a mirror to the MRI head frame and Steven wears headphones.

This works great for Steven, whose biggest problem in the MRI has been falling asleep and then twitching. The movie helps keep him awake.

I accompanied Steven into the MRI and about 20 minutes or so into his 1-hour-plus scan, I heard a sound, through the ear protectors and over the screeching and jackhammering of the equipment.

Standing at Steven's feet and peering into the tube, I could see that the mirror had fallen off the head frame and one corner of it was poking directly into his eye.

So I stand at the glass waving my arms and pointing at Steven and finally get the attention of the MRI techs, who mount a new mirror and the scan continues uneventfully.

They want to pull the IV since they think it won't work well enough for Steven's Tuesday blood draw but Steven is adamant that he wants to give it a try.

So, we leave the IV. It's late, the cafeteria is closed, too late for the Grizzlies House dinner and we don't have a car this time, so Domino's delivery it is.

And prayers for clean scans...

- Kathleen

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