Hi Deborah. I'm sorry to hear about your dad. You are clearly a very dedicated daughter and for that he's very lucky.
With MDS there is frequently a tradeoff between quantity of life and quality of life. The most aggressive treatments are harder on the body and less appropriate for patients at age 88, but your dad's active lifestyle is a strong incentive to try to manage his MDS and get his blood counts in range, so he can return to as much activity as possible. The more you learn and understand about MDS and the treatments for it, the more you can help your dad and his doctor make the best choices.
You can learn how some patients and families cope with MDS here at Marrowforums. I have two other suggestions for getting more information:
One is to contact the
Aplastic Anemia & MDS Internaional Foundation. They can give you information about MDS and send you an excellent information packet. They can also steer you to other resources. You can go to their website, call them at 800-747-2820, or email them at
help@aamds.org.
The second is to ask your dad to reconsider letting you go to his next appointment. Explain that not only can you help listen and ask questions but that
you will feel better, given how worried you are about him. If he will do that for you, great!
If he still doesn't want you to go to his appointments, ask if he'd give you permission to talk to the doctor separately. Some doctors require a signed release to talk to family members (patient's rights), and that's reasonable. If your dad says OK, arrange to talk to the doctor on the phone (or by email) or arrange your own appointment with him/her.