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

Saturday, July 31, 2004

PMS and Memphis-Bound!

I promise no more e-mail floods for a while.

Tomorrow morning Steven and I leave for Memphis. Doug and Sean will hold down the home fort.

This is Steven's first post-treatment followup visit. We arrive in Memphis Sunday evening and will be staying at the Memphis Grizzlies House, which is part of the St. Jude campus.

Our dance card is full. Monday is Endocrine Day, where we have our first visit ever to the endocrine clinic. Most kids who get craniospinal radiation end up with growth issues and have to take growth hormone. Steven will probably be on growth hormone before the end of this year.

Tuesday is Brain Function Day, where they test to see how much damage may or may not have been done by the radiation. First, a functional MRI, the purpose of which is to look at Steven's brain function, not to diagnose any possible tumor growth.

It's a slick contraption they've rigged up that allows Steven to view a computer screen from inside the MRI tube, I'll try to take a photo if I can. They put a button in his hand which he can press from inside the MRI tube and they show him stuff on the screen, for example, "here's a shape, press the button whenever you see this shape". It's as boring as all-get-out, takes almost 3 hours and if Steven stays awake past an hour and a half, I'll be surprised, especially considering the time difference between California and Memphis, the MRI will be taking place about 6 am California time.

Then off for neurocognitive (similar to IQ) testing. This will be another grueling three hours and will hopefully give us some idea where he stands.

Wednesday is the Main Event, aka Marathon Torture Day, where they cram in as many tests and stress as they possibly can into a single day to see what kind of stuff we're made of. Steven's day begins at 8:00 am and ends at 7:00 pm, and if things go like they usually do, we probably won't be done until 8:00 pm.

We start with a blood draw, a warmup for later in the day when they'll have to insert an IV. Then off for a hearing test to look for any changes. We expect his hearing is about the same, we can definitely notice a loss, but most of the time he does OK.

Then (and this isn't in the official schedule, but it will be when I remind them about how long it takes to put an IV in for Steven) we get a break, during which they will probably have to spend 30-60 minutes getting his IV in. I'm going to try and track down his behavioral medicine friend Dr. Mark, but on short notice, he may or may not be available. We'll see if they can do it with only 5 medical personnel this time (instead of 6 like last time), and hopefully he won't be a sobbing wreck, but I wouldn't place money on it. If you have a moment on Wednesday, perhaps remember him in a short prayer, that his IV procedure will go smoothly, usually we're both crying by the time it's done.

Then off to another 3-4 hour session of neuropsych testing. They used to try and do all six hours in one day, I'm pleased to see that they tried to break it into two days this time.

Then, around 5:30 pm we head off to Steven's brain MRI. Everything else is just the warmup acts, the main event is always the MRI of the brain. The brain, specifically the original tumor bed, is the most likely place to spot a recurrence, the next most probable place is another area in his brain. PMS (Pre-MRI Syndrome), I've got it again, in spades, just like always. I don't talk about it much, but when I asked Steven how he felt about our upcoming trip, for the first time he expressed a bit of PMS himself, perhaps a coming of age or I'm unconsciously transmitting my own worries to him. I told him it's a mother's job to worry, his job is to have as much fun as possible. He didn't even mention the IV, but I think he hasn't thought of it yet, usually that's Steven's main event.

So, again, if you have a moment and you've got the ear of the big guy, maybe offer up a prayer or send your good thoughts that all of Steven's MRI results are good ones, and that his little brain not be filled with worry about the future and all those things over which we have no control.

Thursday is Spinal Metastasis Day, on which we look for cancer in the most likely place of metastasis, the spine. We must show up at the MRI center less than 12 hours after we leave Wednesday night for Thursday morning's spinal MRI. 2-3 hours more of pounding, banging, and shrieks of all different frequencies as Steven naps and I pray for favorable results. Then a quick visit with Steven's neuro-oncologist, Dr. Gajjar, and with no time for lunch we will be whisked off to an outpatient operating room for a lumbar puncture to sample Steven's cerebrospinal fluid to look for cancer cells. He may or may not have to have this procedure done with general anesthesia, once he was able (with Dr. Mark's help) to do it under local anesthesia, we'll just have to wait and see.

Then, God willing, Steven's IV will come out and Dr. Gajjar will come tell us that everything was clear and we'll come home for three months to wait for the next visit.

Then there's the travel adventures we somehow always manage to have, hopefully this time our flights will be uneventful and we won't be sharing a plane with that Syrian band that caused all the hoopla on Flight 327 last month.

Wish us well, please send your prayers and positive thoughts our way tomorrow and next week, we appreciate so much everyone's support and good will.

-- Kathleen

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