Two Week Delay

In the last post about Charlie’s chemo, I mentioned that his meds had been increased to accommodate for his elevated ANC levels and his increased Body Surface Area (BSA). Since then, we have had another visit to start Cycle 7 of Maintenance. This past Tuesday Angela and I both took off work to take Charlie in for his lumbar puncture and it turns out that the increased medications have been doing their job. If you remember he is supposed to stay between 750-1500 with an ANC below 500 being neutropenic and a cause for concern. Well, we’re there, Charlie’s ANC was 380.

Nothing changed for Tuesday’s visit, Charlie still got his methotrexate and vincristine injections. He will still be taking his steroid this week to boost his numbers, but we will be taking two weeks off on all his other medications that we administer daily and weekly. This is a new situation for us. Since his diagnosis, Charlie has never had an ANC level this low (to our memory) and had only one week off of treatments which was between Phase 2 and 3 (I think). In two weeks we will go back to the hospital so they can check his counts and let us know if he can start talking his meds again.

We were not too surprised to find out that Charlie’s numbers were so low. He has been really grumpy lately. It is usually hard to remember that he doesn’t feel well most of the time, but the last couple of weeks that has not been the case. We have been experiencing wild mood swings and decreased appetite. We are hoping that after a few days of steroids and no other chemo, Charlie’s numbers will rebound and he will begin to feel a lot better. For now, we are on increased personal hygiene duty making sure Charlie doesn’t get sick while he is vulnerable.

This is Charlie patiently waiting for Chili-cheese Fritos after today's procedure. The cafeteria is closed during change over to lunch, but it's a ritual and we can't do without.