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My siblings and I have put most of this information together from bits and pieces that my dad has said and lots of research to make sense of his clues. I think he really wants us to know and he is in a very hard position. I have been so concerned knowing that the drugs have not stopped her need for transfusions. I read one study that indicated that low to intermediate risk patients who fail Vidaza have a median life expectancy of 17 months. That is hard for me to process as a possibility since we haven't begun to work this through as a family. I'm encouraged to hear from you that there is a chance that she can keep going for some time. I know that each person is so unique with this disease and having no access to her doctor leaves her family fearing the worst. As far as conversations with her, she will talk about anything "safe," but it's emotionally draining.
I appreciate your wisdom in encouraging me to talk with her about what she will talk about. I admit staying away more lately, just to avoid the stress. That isn't probably helpful and will lead to much guilt in the long run. She may be depressed, but she would never seek help for it. It is fortunate that she is cooperating with her doctor's treatment regiment. I think I mentioned, though, that she does seem to believe the doctor can fix this.
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