Weekend Update

THANK YOU THANK YOU THANK YOU for your focused and committed prayers!

I received an email from someone who I have never met, with Psalm 27:12-14 and "Release [my] expectations into His hands. The Lord is working on [our] behalf...while we are waiting, God is working." This spoke to me in many ways, as patience has truly been what has gotten us through the last 9 days. Saturday morning we were overjoyed that Madeleine had a bowel movement, the first one of the week and so desperately needed to indicate that her gut is beginning to heal. Her personality is also changing, she is happier I'm sure as a result of feeling better. We have to sit and wait to see how quickly she will heal. It is likely though that we could not get a break at home before beginning the next cycle of chemo. She has to first heal with her belly and gut and clear all the fluid from her lungs without further ailment. She also has two more MRI's of her brain and spine, another lumbar puncture, a surgery to replace her CVC - the line in her chest, be completely off the morphine and IV nutrition, and be 100% recovered. While we've called her the "overachiever," we are by no means pushing her to get well faster than she can; she is so delicate right now. WE ARE STILL VERY HOPEFUL that she will continue to do well throughout her treatment. We are suffering the "growing pains" of patience and having to have it whether we like it or not.

Due to her slow recovery, Madeleine has needed platelets nearly every day for the last week and a half. So far, there is only ONE PERSON who is a compatible direct donor for her, and we so graciously thank him for his continued donations. Even I cannot donate for her because she requires CMV-negative status blood products, which can only be A-negative, and the availability of her products I worry about. CMV status indicates exposure to a virus that does not affect the person who has it, but will affect compatibility in donations. About 80% of ALL people are CMV positive. Infants and especially low immune system infants require CMV negative products for their protection. If you have ever donated blood and been told you are a "baby donor," that is what it means. So, if by chance you are A-negative or O-negative blood type and know you are also CMV negative or want to find out, please let me know if you would consider being a blood and/or platelet donor for Madeleine. Turns out these people are few and far between.