April 2003

4/16/03

We are making preparation for Easter and enjoying the absolutely gorgeous weather here in the Brazos Valley. Erin has to be especially careful out in the sun, because of the accutane, but with sun screen, long sleeves, and hats, we have been able to enjoy many beautiful days in the garden. Besides sun sensitivity, accutane has also really dried out her face, with severe cracking and bleeding, especially around her nose, cheeks, and forehead. The good news is that she has had very few of the behavioral/psychological side effects that were predicted. So, a temporary unpleasantness on her looks, but she feels well and acts sweetly. We think that is a decent trade-off.

Erin's counts have recovered well from radiation and the last of the somnolence syndrome has left. Erin will be re-scanned May 6th through May 9th, with the hopes of starting the tumor vaccine the following week. I will keep you informed.

4/3/03

Erin was not able to start the tumor vaccine today. Her lymphocyte count was a hair under where it needed to be to begin. Since the vaccine depends on the strength of her immune system to fight off any random, floating tumor cells, it (her immune system) needs to be at a certain strength level before she begins. Unfortunately, today was the last day she could start the vaccine, based on the scans we did during spring break. That means we will have to wait until after her next scans to began this process. I think these will be in mid-May. Until then we will be recovering from radiation and taking oral chemo. In this case, accutane. Accutane works great on acne, BUT it also has the same effect on neuroblastoma cells. Apparently, having accutane in you system switches off tumor cells from replicating themselves. It works best when there are no tumor cells (obviously) or just a few.

Erin is going with her class to the Antique Rose Emporium in Independence tomorrow. Thanks to Covenant Day School (especially Mrs. Boski and Mrs. Jacques) for scheduling around her trip to Houston today!

4/2/03

We have had a strange week. Erin got tireder and more irritable as the week progressed last week, which I attributed to the cumulative effects of radiation. By Saturday she was taking long naps, and Sunday she fell asleep in church (I know, this is not necessarily a concern). Sunday night she slept almost 13 hours after having already napped twice that day. A call to the radiologist Monday morning informed me that Erin's recent radiation would not cause these side effects.

When I finally tracked down Erin's Houston doctor, she said that Erin must have Somnolence Syndrome. This occurs about 2 - 4 months after TBI and about a quarter of patients get it. It lasts from 4 days to 2 weeks, and there is no real reason to worry. She is continuing to go to school everyday, she just needs to rest when she gets home.

We didn't get to start the tumor vaccine yesterday because while we were at Dr. Parr's office Monday afternoon waiting to find out why she was sleeping so much, Erin had a slight fever. This delayed our trip to Houston until tomorrow (April 3). Erin needs to have a punch biopsy every other week after we start the vaccine program. We can do it locally if we can find someone willing to do it, otherwise we will have to go to Houston every week. If you have any suggestions, let me know. Usually dermatologists can do this in their office, but our family's dermatologist, Terry Jones, refused to do it on a patient Erin's age.