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Hi, Michelle.
I can certainly sympathize with the problem of what to tell young children when you're dealing with a serious illnesses like MDS and PNH. My children were 11 and 14 when I was diagnosed and since it wasn't possible to hide or downplay my condition (hospitalization, drugs, fatigue, etc.), we told them what was going on from the start. I suspect your kids know something is going on even if they don't have words for it. I think it is better to tell them the basics and take your cues from them about how much they need or want to know. They will feed off your attitudes, so if you are comfortable and confident about your prognosis, they will be too.
Hope this helps.
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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