Hi Sylvia.
If the one-day conference is anything like the ones I've been to in the past, you'll appreciate the chance to meet MDS experts and other patients in person, and lots of useful information will be presented. Plan to take notes. Some patients will be recently diagnosed like Henry, some further down the road. Having a chance to ask questions is great, although it's for a limited amount of time, and it's not an individual consultation like you'll get at Stanford. You'll probably learn not only from the lecture and any questions you get to ask but from the questions other people ask as well.
If you don't already have them get the
MDS booklets from the Aplastic Anemia & MDS International Foundation. The booklets were just updated, with the new versions released last month.
It's good that you are making a list of questions. Maybe Marrowforums members can answer some of them before you take the rest to the one-day conference. The best source of information will continue to be Henry's own doctor, since he or she can speak with authority specifically about Henry's condition and prognosis.
What tends to happen at these short conferences is that everyone gains a better understanding of their disease but many find at least some of the slides or explanations to be over their heads. It's a complicated disease and there are multiple types of MDS. But as we continue to educate ourselves, we understand more and more of what the doctors and medical literature say. I'm sorry to hear that Henry has secondary MDS since it can be tougher to fight than primary MDS, but if there's a bright spot it's that you probably already understand the basics of blood counts, what bone marrow biopsies are, the types of white cells, what chemo treatment involves, and so on.
It's great that Henry is an active person and likes to get out in the world. Being active and generally healthy gives you a jumpstart in your battle with any serious disease. He can ask his doctor for specifics about what he can do and what he should avoid, but with MDS the usual cautions are to avoid risks of injury, bruising or bleeding when you have low platelets, not overexert yourself when you are low on red cells, and avoid sources of infection when you have a low white count. None of that means you are confined to quarters, so I hope you'll get to continue your vacation plans. Within those types of limitations his doctor is likely to encourage whatever activities he is capable of. It's also good for your peace of mind to continue doing what you are used to doing, even if you sometimes have to scale things back (e.g., stay closer to home, or take a tour bus instead of climbing Mount Everest). We want to be as normal a possible!