Dear Friends and Family Oct. 29, 1999
Dear M----....
Once again... perhaps this is a bit too heavy for students at the school so I'm writing to you tp pass on to faculty and adult friends. I just sit and write what comes to my mind... and I tend to be pretty up front. The prayers... we needed them today and we appreciated them.
We got the news about the bone marrow transplant today. I went to Kansas City to pick up Rachel and Diana and see the bone marrow doctor. The doctor was excellent. He and bone marrow nurse specialist took us to a conference room away from Rachel (Emily and her friend, Erin, came along and stayed with her) and they talked to us for an hour and a half.... everything from A-Z... any questions... nothing held back.
The good news... Rachel is doing well and progressing toward the bone marrow transplant on schedule. It will take place in early December. She will stay in the hospital probably until early January.
The bad news.... after Rachel returns home from the hospital she will not be able to go back to school for nine months to a year..... period. It will take that long for the new immune system, provided by the transplanted bone marrow from Amanda to establish itself. During that year Rachel will be prone to any
illness/bacteria around her.
One of the major problems with all children/adults with low immune systems is fungus... like the kind that gets on bread. Some of the children who return to the oncology ward after treatment are infected with fungus inside their bodies... nasty stuff to get
out.... and as we know, fungi is all over the place and very hard to avoid.
The "cure rate" (i.e. survival for 5 years) for AML after transplant is about 60%. The doctor told us that as well as Rachel is doing the survival rate should be even higher. She just has to make it through the next month and improve again after the last two weeks of chemo, which have knocked down her immune system. If she's improved by the end of November she'll proceed into the transplant. She's also extremely lucky in having a same-sex donor sibling... the odds are a lot higher.
We came out of the meeting with high hopes... but we didn't have much time to discuss these things as when we got back to the room Rachel had "spiked" while we were gone (i.e. her temp had reached 101.5). She couldn't go home and today was the day she was to be released. She was lying on the bed, limp.... a
lot of hard facts with some promising projections... and now this. It was very hard. I had to leave Diana and Rachel and come home. I was very glad that Emily and Erin were with me. The only good thing is that we didn't leave with her, get home, and have to turn around and go back to the hospital.
Once a kid spikes s/he has to stay in the hospital for 48 hours.... so we'll have to wait til Monday morning to see if Rachel can come home. She is tired of the hospital and angry and scared.... all understandable. She has been a strong, positive force... but she's only seven years old and human.
Today the chemo's affect on her could be seen. Today they also removed the stitches on her Hickman line... painful and wore her out emotionally. I continue to be amazed at the endurance of these children. I also have a story of special parents.
Last month there was a baby in a room next to Rachel and me. Some nights she cried off and on all night long. Rachel was in isolation and we couldn't go out in the hall so I couldn't figure out what the problem was. One day I saw what appeared to be the parents.... just one day.
We left for Topeka and came back two weeks later with Rachel for a scheduled visit. Rachel's immune system had risen and we could "mingle." We met lots of the parents/kids on the ward and found out about the mystery baby next to us the previous month.
She was nine months old with cancer of some sort and blind. For some reason the parents weren't around at night. There could be many reasons for this. I know not why and that is not the important part of this story. The "miracle" was that the nights when the baby did not cry it was because other mothers with children on the oncology ward had come in and rocked the baby. These mothers with ailing children of their own, probably exhausted, would wait until their children were asleep or with Dad and go into this room and love somebody else's kid..... pretty special people.
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