Scared

[hope&faith]

My dad was diganosed Nov with having MDS with 12-16% blasts and now has chemo scheduled. I am trying to make sure that I fly home across the world approx. 4000mi. to help and be there for him and my mom. I am so scared should I bring his grand kids? They can’t see him during chemo but he will know they are there… He wants them there? My brother and sister dont really understand, but I dont and just cant be the one who keeps explaining to them what’s going on… I’ve tried from the start and they did not grasp it and lucky for them they did not do the research. I’m sorry just really scared and confused. I just want my dad to be okay. I am thinking about flying my family 4,000 k miles to be there for my dad becuase I just love him sooo much!!! Sorry and thank you for listening!!!!

[patti]

Hope,

It almost sounds like you need to take a trip to see your dad by yourself so you can assess the situation and talk to his doctors directly. If you have childcare at his home (via your mom or someone else) than maybe taking the kids would be okay. But at this point, it really sounds like you need a clearer picture of what type of MDS your dad has, what type of chemo they’re wanting to do, etc. etc.

Do you know where he’s being treated? Do you know what type of MDS he has? How old is he?

Don’t stress out too much about what you read on the web regarding prognosis. Most of those statistics are very old and several new treatments have come along in the last few years. But if you could get some answers to some basic questions about his disease it would help you decide what you should do. Maybe your mom can answer them for you or you can ask your dad to have his doctor call you and explain all this to you so you can get some clarity.

Best wishes,

patti

[CarolineG]

Hope,

I agree with Patti. You learn alot when you can speak with the Dr. one on one.

Website information is wonderful and quite helpful but don’t put all of your stock in it. I did at first and it scared me to death. The basic information is good but don’t rely on the numbers and prognoses too much. Every person is different and this disease affects everyone differently. New treatments are coming out all the time. One doctor told us that every patient’s profile is like a jigsaw puzzle and no two are the same…only the basic information corresponds to each person.
It is hard to make decisions like the ones that you are faced with. I feel for you.

All the best,
Caroline

[Suzanne]

I think I would do what your Dad wants. If he wants the grandchildren there -take them. If he doesn’t want them envolved right now, wait and you go without them. I did not see children during the actual administration of the chemo drugs but that was only few days of the total hospital stay of approximately a month. I did see all my grandchildren once during the long wait for my counts to come back before I even knew I was in remission. They could not come on the floor but I could go to see them in a lounge wearing a mask. It was a little wierd for them. I had on a hat because of no hair and was getting antibiotics etc so had drug lines attached with a rolling “tree”with the drug bags hanging.It was Thanksgiving Day and they brought me a home cooked dinner. I was not up to much energy wise so they did not stay long and my children had explained to them how I would look. If I had not been able to get up,get dressed and walk around the halls, I might not have wanted them to see me. See what you Mom thinks and what your Dad wants.

[Author]

Posts