Derek is now in his second cycle of "Maintenance." This time, his ANC has dropped quite low. Last week when we went to the clinic for labs, it was only 300. They discontinued his oral chemo this last week and asked us to come again today to see if it had risen. It did, but only slightly. It was 700 and not high enough to continue, so he has another week off oral chemo. Next week it will likely be high enough to continue, but he will only get half the normal dose until his ANC stays above 750. Then they will gradually increase it if he can tolerate it. His bone marrow is getting tired, they tell me, and it is taking longer for it to bounce back. He is also very sensitive to the oral Mercaptopurine which, they tell me, is good. He may not need the full dose to accomplish its target which will likely be easier on his liver. Next week he is scheduled to
 |
| Chemo Curls |
|
receive the study drug Nelarabine again for five days in a row, so we will live at the clinic for another week. We haven't done that in three months! Somehow I didn't miss it. Last time he received Nelarabine back in July, his ANC dropped very low (100), he caught a flu bug, and ended up in the hospital for nine days. Hopefully that won't happen this time although he is coming into the week already quite low.
Overall, Derek is doing well. His appetite is pretty good. He has energy and is happy to be doing home school with Kristen. He lost a tooth last week, and his hair is growing in fast. This time it is very curly. I have never cut curly hair, so this will be something new.
Derek and Kristen were excited for the chance to watch the space shuttle Endeavor land at Edwards Air Force Base on September. 20. We wanted to avoid the crowds when it landed in Los Angeles, and friends were able to arrange for us to get onto the base to see it. We had a great location overlooking the runway and even had shade while we waited for two hours beforehand. After watching it fly by, then land, and taxi by us, we went over to the flight museum to see some famous planes. Derek loved it all - the SR71 (fastest plane ever), the first plane to break the sound barrier, cool helicopters, and more. Even better (in my current opinion), we had the place nearly to ourselves, so I didn't have to worry so much about his exposure to infections.
The next weekend, we went for a hike up in the San Bernardino Mountains. Unfortunately, the lovely trail we were on had a hornet's nest in the ground right beside the trail. Derek and three others in the group got stung. Derek got two painful stings, one on each leg. However, besides the pain, he had very little reaction and hardly any swelling. His doctor said that his immune suppression probably prevented more of a reaction. I guess there are small silver linings on even the darkest clouds.
