Dan and I went to see his NO (neuro-oncologist) yesterday where he received his second dose of CCNU. His platelet count is very low and expected to lower during the next 6 weeks. Dan's physical activity was limited by doctor's orders in order to reduce any potentially dangerous "bleeds" and that has Dan a little down. He had just started running again, but that is on hold for now. We are checking his count every week now (it was around 100 today) if it gets in the 20-30 range he will have a platelet transfusion.
Last week we celebrated Dan's 9 month anniversary from diagnosis (7/8/2007). We are looking forward to his 1 year anniversary when we can officially thumb our noses at his prognosis and live as "outliers"--or someone who does not fall into the statistical norm. Even though Dan and I strive to live our lives day-to-day we do look forward to celebrating each milestone no matter how humble in ambition.
As for Dan's planned treatment schedule...If the cancer continues to be controlled (suppressed--or conquered, as I prefer to think) and Dan's blood counts do not bottom out, then Dan and I will go back to Duke on June 16th where Dan will have another MRI. If that goes well, then Dan will begin another 3 cycles of Temodar (or 12 weeks of oral chemo). We will continue on is this fashion cycling through the 3 types of chemo therapies for as long as his body can tolerate it (up to 2 years). At that point we will begin a "chemo holiday" that will last for an undetermined amount of time--until regrowth. If Dan has re-growth at any point we will start over with surgery and move on from there. As for the curative front...there are several studies in trial now that are potentially curative in nature. I have met many individuals (through the internet) who are several years out from diagnosis without regrowth of tumor. The major determining factors seem to be age, health at onset, and genetic predisposition.
Dan and I are doing well. His energy level is low (due to chemo), but his memory is improving and we are having fun together. We are incredibly grateful for you. There are days and weeks where it is difficult to get outside of our own situation and really interact with you, our support system. We really appreciate the support that we receive and we look forward to the day when Dan is totally restored and we are able to be of active service to you in return. Until then, know that we lift you all up in daily prayer and we are ever hopeful for a perfect tomorrow.
Much love,
Leah and Danny
