Pcebrerojr,
I too experienced the shock of having a loved one diagnosed with MDS. In my case, it was my wife. I wish nobody else ever had to go through it, and I'm sorry for your anguish. Take heart that your dad's athleticism gives him an advantage over most patients. He's actually young for an MDS patient, and that helps with the prognosis too.
Your father may be putting up a brave front for the family's benefit, or he may just be the kind of guy who feels confident he can beat this disease. Part of that may be because he's able to
do something, namely beginning treatment.
If you're like me, feeling helpless compounds the fright of learning about such a serious diagnosis. So it's worth knowing that there is a lot you can do. Here are some actions you can take:
If you're both in the same city, be there for your father. Visit as much as you can. Even the most stoic patients are very likely to benefit from the family around them. Just being there is a great form of support, and a comfort to everyone involved. If you're not in the same area, stay in touch however you usually do: phone calls, videochats, text messages, etc.
Chances are that nobody in the family knew much about MDS before you got this terrible news. It's very important to find out more about this disease. Concentrate on understanding the basic problem with bone marrow and blood cells, and learning about the treatment choices. It's much less important to try to guess how he ended up with MDS; they usually can't tell.
Request the MDS information packet from the Aplastic Anemia & MDS International Foundation. You can do that
here. Read about MDS
here and
here and
here. It won't all soak in at first, but keep it for reference and you'll soon learn the basics. Then help explain MDS to other family members.
MDS is not a disease you inherit or can catch from someone else, so make sure that nobody gets the idea that they should stay away from your father "to be safe".
Make sure your father's doctor has plenty of experience with MDS. His MDS treatment shouldn't be directed by the family physician. If he's in Los Angeles like you are, there are great centers with MDS experience: UCLA, USC, Cedars-Sinai Medical Center, and the City of Hope.
Consider yourself to be part of your father's team. If you can go to appointments and treatments with him, and he doesn't mind, you'll both benefit. If he needs blood transfusions, consider rounding up some donors among friends and family.
Help your father prepare a list of questions for the doctor before appointments. Whoever goes to appointments with your father has the important role to take notes and to make sure the questions on the list are answered.
Somebody in the family should be the "spokesperson" who others can call for news updates. It can be the patient, but often it's a close family member who doesn't mind keeping everyone else up to date. That could be you.
Let other Marrowforums members help you, and keep us up to date on your father's (and your) progress.
Every family has its own dynamics, so I'm telling you tips that work for most people. Play it by ear, and don't be shy about asking for help and leaning on each other.