Day + 66

Greetings friends and faithful followers,
We are praying hard for Amelia. We seem to have taken a lot of steps backwards here. We were doing great and counts were looking good too. Monday was clinic and white blood cells were down to 3.0 and platelets were 22, hemoglobin was 10.4 but she had red cells a week ago. The hemorrhagic cystitis is back with vengeance. We were celebrating yellow pee and teeny tiny blood clots last Thursday and now we are back to pure blood and major clots, basically over night! We are both beyond frustrated. There are times I think we might need to go to the ER because she can't pee...then she sits and relaxes and is able to go, but unfortunately it is now pure blood when she is going. I get so depressed. She has stopped wanting to eat. I just feel like we have hit a brick wall and there is no way around it. We have about 6 weeks left here, but that may be extended if things don't improve.
I never thought that I would have to for a second time in my life pray for yellow pee and for a child to be able to pee with ease. It is just so dang frustrating!!