Waiting for results of yesterdays FIRST BONE MARROW TEST since we got here. It will tell us just how many are Emilys old cells and the new cells from the donor that has been reproducing. So interesting the way the describe how this happens. Somehow the stem cells actually know thats where they belong and dont just go swimming along in the bloodstream. Kind of like a homing device Im told. So this test is the next big thing since five weeks ago when she had her BMT. We did get some not so good news tho, Drs. are not going to let her go this coming week like we had hoped. Emily has a bladder infection and isnt getting better nor worse. Until her immune system kicks in, it wont get better. The steroids are a must to keep her from getting GRAFT vs HOST DISEASE but dont let meds work for bladder infection. So they are pumping her with a lot of fluids to protect her kidneys and bladder. She is quite tired of of peeing every 10-15 minutes. So I wormed it out of them and was told at least one more week after next. Other than that......Everything else is perfect with her. EVERYTHING!!! She is learning the guitar, drawing pictures, making a paper mâché cat, doing her math homework, and getting through each hurdle as it comes. Her room is decorated to the hilt! I have had a lot of fun doing it. It is an amazing room that tells different stories that we have experienced. Our UGLY HORRIBLE NIGHTMARE (2nd edition) has given us the longest stay ever for us. We were admitted on Monday August 25th! We have some beautiful memories. We have met some people that have made an impact on us. I have met some women at the family house where I stay and hope we stay in touch. Emily and I did a video with a wonderful lady named Jade. We will be putting it together next week with her and she will put it on their website. Its a great thing she does for these kids in the hospital. I feel honored she picked us to have pictures with when the San Francisco Chronicle wanted to do a story about this group. Ill tell you more when it is ready to come out. But tonight I am blessed its a quiet evening. Everything is finally done. I see there are three muffins left I made this morning, so now there will be two and off to my temporary home 8 blocks away. Good night everyone. The biggest decision I have to make is do I take my car and hope to find a parking spot near to the house or walk? It is all down hill.
Posted on: Fri, 10 Oct 2014 03:27:46 +0000
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