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Quick update - no joy with the steroids (as I expected). Neutrophils have been 0.00 for the last 2 weeks and haven't got above 0.02 for the last 3 months. They are going back to the drawing board with the bone marrow samples they have to see if they missed anything.
In the mean time she is being weaned off the steroids for 2 weeks then they will start her on something else that might take 2 - 3 months to start working.
Our regular consultant seems to think that she could just live a reasonably happy long life without neutrophils so they aren't really considering a stem cell transplant at this stage. She's been out of hospital for 7 or 8 weeks now with no infections. Her infection markers last week were 6.6 which is normal. They were over 200 at one stage!
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