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

Tuesday, March 07, 2006

The Music of the Machine

Steven and Zach playing foosball at Grizzlies House

Last night we had dinner at the Spaghetti Warehouse with Steven's buddy Zach, who had radiation the same time as Steven for a brain tumor.

Steven was dragging this morning, after a little wheezing last night. Memphis is the allergy capitol of the world, something to do with the proximity of the Mississippi River, and we'd lost or forgotten his allergy medication somewhere along the way from California.

MRI preparations were the first order of the day. Elomax (numbing creme) and Tegaderm (sticky plastic film) so that his arms are feeling no pain by the time it's time to put the IV in.

Then a bone age X-ray, helps see if he's growing according to schedule or not and helps the endocrine docs determine if he needs growth hormone or other supplementation.

Miss Leslie removing the tegaderm

We saw Dr. Gajjar before the MRI this time because he's not in the clinic tomorrow. A physical exam, everyone thinks he's looking great.

Then Steven's personal IV team arrived, Miss Leslie the nurse and Miss Angie of Child Life.

Miss Angie asked him if he wanted her to stay this time. Steven said yes but I think he's getting to the point where he's a little embarassed to ask.

It's finally getting so that putting in an IV gets a little easier each time he does it. In November it was the first time he did it without Ativan, this time was the first time there were no tears.

The needle goes in-- shock, but no tears

Plenty of anxiety, but no actual tears. I'm so proud of him, and of all these kids who have to repeatedly endure feared medical procedures, they're true heroes.

We saw the speech therapist, who evaluated him and gave him the highest score she could give, even after his cleft palate and his other trials, he's continues to improve.

Then Dr. Khan, Steven's neurologist. Dr. Khan prescribes and follows Steven on Concerta, which we started this year to address attention problems post-radiation.

Dr. Khan was happy to hear that Steven is getting A's and B's this year, after the struggles of last year, and we decided to keep the medication as it is for now.

Then the main event, the scan. Steven fell into a deep sleep for the hour or so it took to get the detailed pictures of his brain.

A couple of scans had to be repeated because he was moving, so it took a little extra time.

I stayed in the MRI room with him. It may sound odd, even though I'm always anxious, it's a peaceful time in a way.

Steven settling in for the MRI

It's my time to just watch him sleep while I meditate, pray, and bargain with God. On some occasions it's been a time I can cry without him seeing me.

All to the accompaniment of loud thuds, bangs, ear-splitting shrieks and whistles. Each scan they do sounds different, some sound like a jackhammer, some sound like a screaming teakettle.

There's a special sound the machine makes as they inject contrast.

King Steven

It hit me today for the first time that I've done this so many times with him now that I would notice if they changed a scan, or the order in which they do them, just by the sound.

The machine has it's own kind of music.

We get results tomorrow. Thank you all for your kind thoughts and prayers.

- Kathleen

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