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

Sunday, October 05, 2003

Our First Week In Memphis...

Our first week in a nutshell--

First, I am mostly offline these days. We're staying at the Ronald McDonald House in Memphis. The address is:

Steven Bell, Room 5 Ronald McDonald House 535 Alabama Avenue Memphis, TN 38105

Our phone (directly to our room) is: (901) 312-7405

We are CST here, which is 2 hours later than San Diego.

Doug and Steven arrived Sunday night. I arrived late with Sean on Tuesday.

We were supposed to get to Memphis at 5:00 pm, but I suffered some sort of brain problem that prevented me from realizing that Houston is in a different time zone than San Diego. I walked from the terminal in Houston where we arrived to the terminal for our connecting flight to Memphis, sat across the room at the snack bar while my flight boarded, and an hour or so after it left, I realized I had missed it.

The next flight left 4 hours after the flight I was supposed to catch. We made it to that one, and finally arrived in Memphis about 8:30 pm. Our luggage had preceded us, and we were able to view it in a locked room with nobody in it, but we weren't actually able to get it. 45 minutes later, we finally got someone to get it out for us, then Sean and I caught a shuttle to Avis some 5 miles away from the airport.

Avis took my driver's license and refused to rent me a car. It had something to do with my DMV record, but they couldn't tell me what the problem was except between the hours of 9 and 5 EST. It's 9:30pm, 10:30 pm EST now, and I finally decide that instead of taking the shuttle back to the airport, then taking another shuttle to another rental agency, I will walk to the Hertz I can see about 1/4 mile away. The lots are fenced off with barbed wire, so the only way we can get there is to walk out to the street, which has no sidewalk whatsoever and has traffic driving 50-60 mph.

Sean and I drag our luggage through the landscaping. We are both dressed in shorts and Sean is crying because it's cold and it's hard to drag heavy suitcases through grass and bushes. I want to sit down and cry too, but that won't really help anything, so I cry while dragging my luggage through the bushes.

We eventually make it to Hertz and they have no problem renting me a car, an expensive car, but this night any car will do. We find Ronald McDonald House no problem.

Steven has an incredibly full schedule-- hearing tests, vision, physical therapy, occupational therapy, ENT, cardiologist, MRI, CT-- everything we could have thought of and then some. Most days we are scheduled from 9:00 up until 6:00 or so, then dinner, then bed. We have chores at Ronald McDonald House, vaccuum the hall, clean all the microwaves in the kitchen, sweep the teen room and windex the glass, etc., which we do late at night usually.

Thursday Steven has the planning visit for his radiation and we meet the radiation oncologist. We start at 9 am with no breaks. For craniospinal, he must lie face down in a mold they make for him. His limb length discrepancies cause a small curvature in his spine, and it takes them over 2 hours to line him up. His chin is aching from the pressure of the mold, they also put a wire with tape down his back (Steven is deathly afraid of tape), and by the time they are done, he is a sobbing wreck, so brave he never moves during the planning, but when they finally let him up, he shakes and sobs in my arms for 15 minutes or so before he can get it together enough to get dressed. He has these dark blue lines down his spine and on the sides, they cut his hair in tiny spots to mark the places on his head.

Then we've got two more visits, just to cap things off, and a CT scan, all this with no food because they keep telling us they need to give him IV contrast at some point. In the end, it turns out that they don't need to do contrast at all, but now it's 4 pm and we haven't eaten since 7 am.

Except for Thursday, our days at St. Jude's have been for the most part pleasant.

Friday another spinal tap. He wakes up wheezing, but it passes and they anesthetize him for the tap and everything goes great. We go out for ribs and a movie Friday night, Secondhand Lions, had a wonderful time. He wakes up at 3 am Saturday morning wheezing really badly. He hasn't had an episode like this in over a year, and we didn't bring his nebulizer with us, or even his asthma meds.

We call the doctor and take him to St. Jude's. They have a difficult time getting his wheezing under control, so they admit him. He has to spend Saturday night in the hospital, and with steroids is much better on Sunday. He gets to come home, so much for our weekend drive to Nashville.

I feel as though we're signing a deal with the Devil to save his life, OK, we'll save him for you (maybe), it's just that you have to agree to some brain damage, nobody can really tell you how much, he's got all this medical stuff going on already that makes it impossible to tell, he could react much worse than usual, maybe he'll be OK, maybe not, but if you don't do this, he'll die for sure, probably.

Doug and I were given all the consent forms today. If we sign them tomorrow, radiation starts Tuesday. It is difficult to shake this feeling of making a "deal with the devil" and to feel that we are not selling our souls.

To slightly complicate matters, his tumor pathology is unusual. It's not a regular run-of-the-mill PNET, as a matter of fact it kind of looks like an astrocytoma or glioblastoma, which would be treated differently than a PNET and wouldn't require whole-brain radiation, although the prognosis is worse.

How on God's earth are a couple of software engineers supposed to sift through all this stuff and figure out what to do, we program computers, we aren't neuro-oncologists or pathologists.

The good news is that St. Jude's is providing a very high level of care. We are praying that somehow we are doing the right thing. It's never been more important in our entire lives that we do the right thing.

- Kathleen

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