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Mon. 6/16/03 - Hair Loss

Papa Barry shaved his head "to be like Les"
Monday 6/16/03

Les had radiation first thing in the morning. I noticed that when I was rubbing Les’ head (before he woke from anesthesia) I was getting some hair on me. His hair had begun to fall out. After radiation at UCSD, we went over to Children’s Hospital for his weekly clinic visit. We hadn’t seen this doctor yet and she asked if Les had shown any weaknesses in walking or anything because of his tumor. Obviously Les has improved greatly in that area since she didn’t notice. His coordination and strength are improving rapidly.

We also talked to the dietician because Les’ appetite had diminished greatly over the past week. Les had lost one full pound in one week. She had some good suggestions and gave us some samples of liquid meal replacements. She also touched on the fact that if he didn’t eat enough, they would have to surgically implant a “g-tube” into his stomach so that we could put food into him. That was the first I’d heard about that possibility and I wasn’t too thrilled with the idea.

By the time we completed our Dr. check I was hungry (Les didn’t care about eating), so we went downstairs to McDonalds. This time Les had a hamburger and I had the chicken nuggets. We traded a bite so he still had a taste of nuggets. He didn’t eat too much at all, but he drank quite a bit of milk. The activity center (with the really cool toys) would open back up soon after our lunch, so we waited around and played in the hospital waiting rooms (which all have toys in them). In one room, we found ourselves alone with the doors shut. I took this opportunity to explain to Les the importance of eating and the options of what could happen if he doesn’t eat enough food. Regarding the feeding tube his comment was, “That’s not right!” I agreed and let him know that if would put the food down his esophagus and into his tummy we wouldn’t need to do the feeding tube. I didn’t dwell too long on this topic. Just long enough to make sure he understood the concept. The activity room soon opened and we were back to playing with the remote control tractors for another half hour.

Later that evening I went on a bike ride with my cousin, Debbie. It was overcast and cool, but she set a pace that quickly warmed me up. She stayed around till after I got Les into bed and then we went out for a quick dinner. It was nice to be out of the house and with adult company :). That was the night I drank caffeine and stayed up till 1am in the morning (really-really late when bedtime for me is usually 9:30pm). I still had to wake up at 5:15am too, because it is not an option to be late to Les’ radiation appointment.