November 3rd, 2004
We’ve settled into an almost routine. With low ANC (100 at last test), we spend most of the day at home, but go out for a walk, playground, or bicycle ride. At home, we watch shows and do projects. Scooby Doo and Pooh are favorties, though we are branching out to “Out of the Box” and this week the “Land Before Time” movies are on. We have a couple of DVDs in reserve. Right now, Spencer and I are cutting out and coloring cells (white cells, red cells, leukemia cells, “A” cells, “B” cells, “TLD” cells, “pop” cells, gray cells, and “blue” cells). We are making “demonsrator cells” glued to another piece of paper to bring to the Doctor’s office on Friday so other kids can do a cells project and extra cells for crafts for kids who don’t want to cut out their own cells. Earlier we built a building with a parking garage laid out “just like Children’s Hospital” so we could play cars.
We wash hands with soap and water before eating and after any bathroom trips. We use Purell after playing with things, after eating, or just after “a while” if we think hands might be dirty.
I get stickers as rewards when I do nice things, including helping with crafts and taking of pills.
Our biggest challenge in the routine is pill taking. Spencer dreads taking the pills. It used to be just big pills, but now even the tiny little Dexamethasone pills are a problem. The only thing worse is contemplating taking the medicine as a liquid (crushed pills mixed with flavored goop), so we try to suffer through the pills.
The side effects from the Dexamethasone have kicked in big time. He is almost constantly hungry. This morning we had several tantrums to start the day, probably a combination of the delightful mood altering of the steroids and the hunger from 10 hours of fasting while sleeping.
Spencer and I are planning our ride in the 2005 Ride for the Roses. We’ll do the short (6 miles probably) Fun Ride on the Trail-a-bike. Currently, Spencer says he can pedal for one mile if I do the rest. Please donate to the LAF to sponsor our ride.