Sunday, August 06, 2006

We haven't fallen off the end of the earth...

...but we have been really busy for the past few weeks! I hadn't realized that is was so long ago that we posted though. So much has happened. Here goes...

The same weekend after the last post, we gave Sophie a little time to be an almost two year old - a giggly romp in the sprinkler helped with the heat, eased some tension, and provided some awesome 'Kodak' moments. This is our calm before the storm.

On Monday, Sophie had a surgical procedure to insert a port into a vein in her neck that extended under the skin to just above her sternum. The device is called a broviac and has two lines, or lumens, that run externally and allow for IV medicines to be administered without having to use needles each time. She receives her chemo therapy through this line as well as a twice daily dose of prednisone, a steroid, and imunoglobluin (IVIG) therapy monthly, both to help stop the neurological problems. More on this in a bit. The next day, Tuesday, Sophie had a spinal tap (they call it a lumbar puncture or LP) to collect a sample of spinal fluid for the clinical trial, and a bone scan to ensure that the cancer had not spread. We remained in-patient until about 10:30pm that night, then rushed home and packed for our trip the following morning.

On July 19, Sophie and Mom traveled to Springfield, IL - via Atlanta, GA and Peoria, IL - to visit the Opsoclonus Myoclonus Ataxia Syndrome specialist, Dr. Pranzatelli (see last post for more on this). The travel was adventurous to say the least, but the trip went well. We landed in Peoria just as a wild storm hit the area. You may have heard about 37 people being killed from the same storm as it hit St. Louis later that night. We survived the crazy turbulence on the plane just before landing, waited the storm out in the Peoria airport (couldn't get to the rental car through the rain and strain line winds) and then drove through the tail - toward the middle - of the storm for an hour and a half from Peoria to Springfield. I have never seen a storm of this magnitude - lightening was hitting the ground on the fields along side the highway. The traffic kept going though, so, so did we - lest we get crushed by one of the many 18-wheelers going 70 mph down the highway. It is notable that Sophie fell asleep about 15 minutes before the plane landed (just before the turbulence) and stayed that way until we pulled into the Ronald McDonald House parking lot about two and a half hours later. That was one pooped little princess!

The rest of the trip was uneventful by comparison. We met Dr. Pranzatelli the next morning and he performed a spinal tap, collecting spinal fluid for special analysis. We made some friends in the recovery room and then took a looksee around scenic (kidding) Springfield - although I couldn't find a place to stop and buy souvenirs, I did manage to get a shot of Lincoln hanging out on a park bench (that was a drive-by picture I might add - okay we were at a traffic light, but I was in the car shooting through the window - no puns intended on the photography lingo, heh)

Upon our safe return, we were able to enjoy a 'normal weekend before starting treatments. Check the next post - hopefully tomorrow for info on the treatments - to keep you from suspense, to keep this short, and to get me to bed before dawn, suffice it to day they are going well. Sophie so far has only the adverse affects of yucky tasting medicine and mouthwash to contend with for now.

1 comment:

Taylor said...
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