St. Jude Day 1: In Full Swing

Someone in St. Jude scheduling must have smiled on us poor left-coasters this time.

They didn't schedule any early appointments on our first day, and they did schedule the brain MRI first thing.

And maybe most important of all, Miss Leslie, Steven's favorite IV nurse wasn't on vacation.

Miss Leslie is magic, Steven is actually sitting in a chair and she's got the needle in her hands and Steven is smiling.

He grimaced when the needle went in, but no tears. This is just such a big deal for him, he begins fretting over the IV insertion weeks before we come.

Miss Leslie knows him well and she teases him mercilessly and this time he left with a smile instead of tears. I'm so proud of him, he's come so far.

The MRI went well. The last three times we've been, they've had to repeat some of the scans because he twitched after he fell asleep, and this visit was no exception.

They weren't able to test his ears because of too much wax, so we're going to see the ENT and get that wax removed and try again later in the week.

A woman from the pediatric brain tumor mailing list, Jen, with whom I've been in longtime contact via email was here with her son Jacob for an MRI the same day as Steven. It was great to be able to meet them in person and to put a face with the name.

It is funny how close I feel to some of these parents, we've never met in person but we most definitely know each other.

Jacob has an ependymoma, another sort of brain tumor, and he was back for followup and was doing well, looked great.

He and Steven hit it off right away (something that does't always happen with Steven) and played video games at Grizzlies House while Jacob's mom and I chatted until after 11:00 pm.

They always leave Steven's IV in until we get final results on his scans, so it was in last night. Jacob told me he hopes for clear scans for Steven so he can get that IV out of his hand ASAP.

The better to play video games with, after all...

I'll post later with results.

- Kathleen