Rylie is on her second day of the chemo drug called Busulfan. She's on this until Thursday, and then she gets a rest day from the chemo on Friday before starting Cytoxin. She'll get her ERT (enzyme replacement therapy) on Friday though, so her tubes will still be hooked up. Actually, she'll probably be hooked up 24/7 from here on out since every time they unhook her there is more of a risk for infection. Rylie is adjusting well to being hooked up (better than I am!), so that is a blessing.
Rylie's hemoglobin levels are decreasing, so she'll probably need her first blood transfusion within the next couple of days. This is par for the course since the chemo is killing off the red blood cells along with the white blood cells in order to prep her body for the transplant on May 7.
Rylie is adjusting well, but she is having a hard time sleeping due to the different environment. I wonder if it is also because she isn't quite as active as she used to be, but I really think it is because of the hospital sounds and routine that isn't like home. Lyle got back about an hour ago from a day trip to Michigan for work. Lyle's mom was here this afternoon to play with Rylie while I went back to the RMH for a break and shower. I'm glad that it looks like this is the last of Lyle's travels for a little while.
For those who would like direction on how to pray, please remember to pray for protection of Rylie's body from all the chemo this week. Pray that her body will be ready to accept the donor cells next Wednesday and that it will not reject them. Also, pray against Graft Versus Host Disease which is a condition where the donor cells recognize they are not in their native environment and attack their new host. Pray that Rylie does not get an infection or complication. Ask God for mercy for our baby and that she will not be in pain from the affects of the chemo. And please remember to ask for complete healing to every portion of Rylie's body. We are blessed to have so many that care for her!
We're sending our love to all our family and friends! We miss you.
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