We have now been admitted and discharged 4 times since we left the hospital at the end of cycle 4. I am beginning to doubt that we will ever start cycle 5. Yesterday during rounds the doctors told me that they were going to keep Averi until she was over the croup and then just start her on the next cycle today. The funny thing is that I believed them.
Today they changed their tune. I was informed that the steroid she is on to help with her breathing can also affect her blood counts, making them appear higher than they really are. With this knowledge, they don't know if her counts are up because her bone marrow has truly recovered or if it is just a false positive. Great.
Then they announced that instead of weaning her off the steroid by today (it was a really high dose) they are going to do it more slowly while we are at home, all the way until Sunday, and we could come back in on Monday for blood counts.
That's when I had to explain to them that there was no point in coming in Monday if I had just given her steroids the day before, because they would just tell me again that it was a false reading. I convinced them to wean it through Saturday and then found her primary doctor to make sure that we can still start chemo Tuesday if Monday's reading is above 1000.
No more games for us...and another week at home.
P.S. Sorry I haven't taken any pictures lately, Averi has looked really pathetic.