Dear Jack
Yesterday we went for another blood test at Sutherland Hospital (I think they will remember us for a while) and today we had our first oncology appointment in Randwick since you've been out of hospital.
Instead of a 1-hour appointment, it ended up being a whole day with another blood test, a chest and skull X-ray and your first Gcsf injection (to artificially boost your white blood cells).
Prof. Marshall told us he's found a research paper published by a team of specialists in Houston who have followed 19 children with myelofibrosis over 27 years. What he told us about it was very confusing, because the outcomes for the children went from one extreme to another. On the one hand I was pleased that there is some valuable information available, on the other hand I've become quite worried about your prognosis.
They're now doing further tests to make sure you have no underlying disease that causes secondary myelofibrosis and to exclude a range of other possible diagnoses. The professor said it could take weeks or even months, but I get the impression they're becoming more and more inclined to think you've got myelofibrosis.
Anyway, we'll just have to be patient.
Love
Mum
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