Jan 15

Two doses in and so far so good. I took Clay on Wednesday to the clinic so Dr. P could see him. He said "Wow, who are you? You look fabulous, and there is so much more of you!" Clay has gone from 39.5 lbs to 48 lbs in about 3 weeks. We continue to taper the steriods, but it is a slow road. Clay was down this week for a few days with the stomach bug, but today when he woke me up at 7:30 he reported that at 3 a.m. he had been downstairs to have a bowl of cereal and a corn muffin. So his appetite is back. His vision seems to be holding steady -- we don't know where it is compared to what was his normal, but he can see colors, can color, and can get around pretty well. We aren't done holding our breath since we saw how quickly his vision deteriorated last month, but we are hopeful. The plan is to have 2 more doses of Avastin, and then do an MRI in the middle of February. If we see stable or shrinkage, then we will remove the PICC line and schedule another port placement. This will put me out of a daily job flushing his line, but it will mean Clay can swim and shower again.