I just have a bad feeling this time that I never had last time. When we were here in 2005, I never thought that we would lose Jossilyn. There was never a doubt in my mind that she would fight this thing and come out top.
Tomorrow the doctors are going to go ahead and do another bone marrow aspirate and lumbar puncture despite the fact her counts still haven't moved. Her extensive bruising has us concerned that the leukemia is still there. There are also bumps under some of the bruising. It might be the leukemia. AML sometimes does that. Even if tomorrow's procedures come out negative, they will probably try to biopsy some of them.
As I said, I just have a bad feeling. But I hope it is because of my own experiences. When we did this in 2005 we had no experience of some one who didn't make it--either directly or indirectly. But last February there was another unschooler about Jossilyn's age who lost a very short battle with ALL (the more common childhood leukemia.) While we had never met her, I was drawn to her story because of our own.
Then when we came back here in January, there was a girl in the room beside ours. Although, older than Joss she had been diagnosed the same summer we were. Same diagnosis--AML. I talked to her stepdad in the hall quite a bit. A couple of weeks after we came in, she died. No one said anything to us, but I knew when things started to get bad. Her last three days were tough. Then after she was gone, and her room was empty and the door was left wide open...I could barely stand to walk by it. I wanted to ask if the staff would just close the door, so I wouldn't have to be reminded of what I didn't want to think about.
I'm such a coward.
I am dreading tomorrow and the waiting. I don't want to know. But then again, I just want to know now. The waiting and the wondering and the hoping is unbearable. I don't want to hear bad news. But once I know, I will deal. I won't have a choice.
Friends and family ask me how can I stand it. What choice do I have?
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okay, so this whole thing sucks, and i'm ready for jossilyn to be better now. and since i'm not her mom, i can't even imagine how ready YOU must be! all i know is my baby was born 8/14/96, and last february when hannah died it ripped a little hole in my heart. i've never met hannah or her mom, but she was just a week older (or younger) than my katie, and an unschooler, and it's not much of a leap to put myself there. my whole family mourned, even my daughters, and we healed a little too, 'cause we stopped and talked about how lucky we are to have this time together. so, this february in a weird way was a milestone for my family, even though we're a million miles away from the jenners and never met. and, well, i'm starting to hate february!! this little hole is getting bigger. this sucks! i'm gonna' go hug my kids, okay?
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