Friday, January 13, 2012

January 9-13, 2012

SD's counts were high enough on Monday to begin the 6-MP. Since we didn't find out until late afternoon, we decided to wait until Tuesday to give him his first dose.

Stephen left Tuesday for a programmer conference in Ohio, planning to return Saturday. Mandy's friend Sarah came to our house to help with the children during Stephen's absence. While we usually leave Emma with a babysitter for clinic visits, Sarah and Emma came along this week and hung out at the hospital. Emma's librarian friend seemed pleased to see her again and to meet SD.

This was the first time that Stephen could not make it to a clinic visit. SD and Mandy missed his presence! Clinic went fairly smoothly, but we received slightly disappointing news. After just two doses of the 6-MP, SD's ANC dropped dramatically, to a level slightly lower than they had even been the previous week. (ANC is a measurement of how well SD can fight infections). Because of this, we need to hold off on the 6-MP again, and are completely dropping the Bactrim.

In place of the Bactrim (a medicine given twice a day, three days a week), SD will receive an hour long IV infusion of Pentamidine once a month. This should give him protection from PCP while not affecting his counts. When he is able to resume the 6-MP, he'll start out taking half doses. His blood is being tested this week for the 6-MP enzyme, which will determine if his body can actually metabolize this medicine. Tomorrow (Monday) he will have his CBC (Complete Blood Count) checked in Traverse City again, to determine if he can resume his oral chemo yet.

In non-medical news, SD has been rapidly progressing physically and mentally this week. Apart from being more demanding and emotional than he was prior to his diagnosis, he seems to be just about back to his old self. He is still weak, but his strength increases noticeably every day. Currently, he can walk with very little support and can stand on his own for short periods.

His speech is also showing great improvement! Not only is his vocabulary back up to speed with pre-steroid levels, but he is now doing new things for him, like trying to say three syllable words and put together sentences. He is also recognizing more letters and numbers, something he was very interested in learning just before he got sick. We are so very encouraged by all his progress. Every day holds new delights as he and Emma both continue to develop and grow in many ways.

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