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You are a good daughter Sophia
Hi Sophia,
I can tell you are a great daughter. Wow 9 kids!!! God bless both of your parents! I have two a 5 and a 6 year old and at a very young age they lost my brother's wife (their buddy) to ovarian cancer at the age of 40. My daughter was only 3. I hate the thought of them now maybe losing my Dad. They are so young to have to deal with this. I am a true blue Daddys Girl and my Dad was also Mr. Fix it!! He worked in NYC every day as well as Newark as a systems analyst and worked with computers when they first came on the scene. He was always fixing things around the house on the weekends and working on the lawn. I always worried about him being exposed to all the lawn chemicals and sprays . . . I would love to develop a questionnaire to see if we can find any common threads to maybe see what causes MDS.
I have heard from a neighbor of mine that a drug she was taking for arthritis might cause MDS. I don't know what the name of it was though.
We are at a state where my Dad still has his feet and hands wrapped and the Neupogen shots are now giving my Dad problems so if he takes the shots he can die but if he doesn't he will die. We don't know what to do now and the doctors are conferring with one another trying to get the next course of action, if there is one.
What is so sad is that my Dad is still with it. He is not experiencing any pain with his pain meds and he still has fight in him but now we don't know what tools he can use to actually fight. My Dad has been my family's ROCK. My words to describe him would be gentle, loving, he was always very liberated, he didn't get caught up in gender roles . . . he was the earner but also the cook, cleaner, diaper changer . . . He was blessed with wonderful parents. His mom is still around and will be 96 this September but my fear is when my Father dies, she will die too because she won't be able to stand the pain of losing her child. I have always come from a very large extended family but in my own there are only three kids. I am in the middle. It has been wonderful having been surrounded by all of this love but always knew the pain down the road of losing everyone one day. It doesn't make it any easier.
I know after living with this illness for 11 years with my Dad I have to be dedicated to helping get rid of this illness so no one has to live with it again.
That is the only way I can get through this and make any sense out of it all.
I am taking the day off from the hospital to spend the day at a swim club with my children but will be back there tomorrow.
Feel my hug . . . . keep me posted . . . we both will get through this together . . .
Love from NJ,
Donna E
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