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Lily,
You are in a tough spot because your mom rejects family help. She may think she is "sparing the children" while actually making it harder for you and your siblings. Since she wouldn't see a doctor for so long, it's a sign that she's had a hard time facing this challenge, much less sharing her feelings about it. It's a fact of life that some people close their eyes when they know they are sick, as if not talking about it will make it go away. From what you say, she may have given up hope of getting better while not appreciating the family she has, the support she could get, and the chances that she'll be able to keep MDS at bay for some time to come. It's never clear whether a child should honor a parent's wishes to stay uninvolved or if adult children "know better" and should insist on helping.
Although you could try to make clear to your mom that you'd feel much better if you could stay informed and help her with health issues, you can only push so hard. You know your mother best. I think you are wise not to press your dad (or the doctor) for information that's not "authorized".
How did you manage to put together so many facts about your mother's recent treatments when she and the doctors aren't keeping you informed?
It's likely that her MDS was categorized as intermediate (not low) risk since she was put on Vidaza so quickly. Although it may seem that the doctors are treating her by trial and error (switching meds when side effects occur), that's actually common with MDS, because there's usually little evidence in advance about what treatments will be most effective, and the interactions with other health conditions, especially at age 79, can leave doctors with only less-than-ideal choices. The answer about what's likely to happen next, medically, is that the doctors probably don't know. That's part of what's frightening about this awful disease; it can be stable or get worse without much warning.
There's a bit of good news among all this: that your mom has lived with her MDS for a couple of years so far. Despite her need for transfusions, her MDS might stay as it is. Iron buildup from transfusions can become an issue, but that can be treated too. It's also good news that she is apparently willing to follow her doctor's treatment recommendations. Patients who give up completely aren't as likely to be cooperative with their doctors.
I should mention that if you think your mom is depressed in the clinical sense, there are professionals who can help, if she'll accept the help. You can also seek out professionals at the hospital or elsewhere who can help you and other family members cope.
Are you able to visit with your parents and talk about other, more positive, news, without mentioning the MDS-elephant in the room? There are probably plenty of family topics other than health to talk about, such as what everyone is doing recently (especially if they have grandkids). Many adult children are able to brighten up their parents' day by bringing over photo albums and getting everyone talking and reminiscing. At 79, your mom has lots to look back on, and perhaps you could make some simple plans for her 80th birthday as a way of looking ahead.
I know this doesn't solve your problem but please know that I understand the tough spot you are in, and that other families have had the same issues with both the medical and psychological sides of a serious illness.
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