Moving On to the Next Phase of Treatment

Andrew had a lab draw at U of M Hospital today. His numbers were similar to other lab draws he has had 2 days after neupogen(he had an injection Wednesday evening). His platelet and hemoglobin levels are still in normal ranges, and his white blood cell count and neutrophil count were elevated by the neupogen(4.0 and 3000, respectively).

We then met with Dr. Walkovich. We talked about long term plans for Andrew's treatment. They are pleased with Andrew's progress so far, even though his stem cells haven't started full production of white blood cells yet. The doctors are also concerned about the long term effects of giving Andrew full doses of cyclosporine for more than six consecutive months(he has had it for about five so far). Therefore, they have decided that they will start weening him off of the cyclosporine beginning with his next hospital visit on October 29. The expectation is that, as the cyclosporine level in his body reduces and more t-cells are produced, that those t-cells will no longer attack the stem cells in his marrow that are producing blood cells. They will ween him off of cyclosporine very slowly, probably over 6 months or more, to help to keep this from happening. If he is weened completely off of cyclosporine and his body is still producing normal levels of blood cells, the overall treatment will be considered successful.

Because his body is still producing less than normal levels of white blood cells and neutrophils, which are a type of white cell, he will continue his routine of two neupogen injections a week to stimulate their production. Long term, the doctors are going to monitor his numbers, and when they feel like he may be producing more white cells naturally, we will probably suspend the neupogen and see where he is at. This will be a trial and error process. The doctors aren't concerned with long term effects of using neupogen, especially in the extremely small amounts he is getting it(.05mL twice a week). Also, there is no diminishing return on successive neupogen injections like there was on successive transfusions, so it should work the same no matter how long he takes it. There are people who need to take neupogen daily for years, so there is little danger of him continuing with it going forward. Ideally he wouldn't need it by this point, but doing it this way has fewer risks than continuing full doses of cyclosporine for more than six months.

Since the neupogen is elevating white cell levels and the red cell and platelet levels are back to normal, Dr. Walkovich and the other doctors have decided that Andrew can return to school. He is starting on Monday. His levels are high enough that his risk of virus or infection isn't much different than other children. It is time to integrate him back into normal life. He is very excited that he gets to return to Mrs. McDonald's class. He has been a little upset and moody when his two sisters are in school and he isn't, so this should help raise his spirits.

Andrew's next lab draw won't be until next Tuesday, October 12, and he doesn't have a hospital visit until Octobe 29, so things should be fairly quiet on the medical front for this month. Hopefully all goes well.