My Dad Lost His Battle with MDS...
 

Hello Everyone,
I have been more of a lurker on here for about 3 years, not able to give much advice but really just trying to find hope and answers whenever my dad ran into any problems with his disease. After about 2.5 years or more of being relatively fine, all of sudden he just started getting worse and worse about 3 months ago (on August 11, his birthday, to be exact) after his Dacogen stopped working. They put him on Hospice, and all of a sudden (it seems) he started having to wear "pull ups", using a wheel chair and walker. His appetite got less and less. He passed away a week ago yesterday, with yesterday being his funeral. I have been terrified of having to write this post and hoped I never would, but here it is. I guess I just wanted to say thank you for posting all the helpful advice and sharing what you are going through. I will say that he passed away very peacefully. I spent as much time with him as possible during those last 3 months, going over there to help and also watching tv with him. I hope and pray that each one of you get through this and find peace (whether you are the patient or family of the patient)!
God Bless everyone and have a happy Thanksgiving,
Jill Sanders

My wife and I offer our condolences, Jill. How sad that you didn't get more time with your dad. We're glad that you made the most of the time you had.

It's obvious to us how wonderful a daughter you've been, looking out for your dad, finding out how best to help him, and just being there with him. You must have been a great comfort to your dad and we hope the hospice care he received was a comfort as well.

This must be a very sad time for you and we hope you'll be sustained by your memories of Joe's better times.

my mom lost her battle
 

Sandem01

I'm so sorry for your lost. I feel your pain deeply. Because I lost my mom three days ago too, she has mds raeb2.
She has some kind of infections and used dacogen. After first cycle of dacogen she felt much more worse. After 3 weeks using dacogen unfortunately she died.
She diagnosed end of 2010 and lived nearly 2 years without any drug treatment. When she use drug (dacogen) I lost her :(

I hope now your dad and my mom in heaven. I will always pray for them.

God bless them.

Ece

Jill, I am so so sorry about your dad. Thank you for posting, I know how hard it is.

Sorry to hear about your dad Jill. Glad you were able to spend time with him in the last few months.

Deb

Dear Jill and Ece,
I am so sorry for both of your losses. I hope you will find peace knowing you did all you could do to for them in their last days.
God Bless,
Sally

Jill, I am very sorry to hear of your loss. Try to remember the good times and the past few months you spent extra time with him. Blessings to you.

Ece, I am so sorry about your mother. I hate it that Dacogen did that badly on her. When my dad first started taking Dacogen, his hgb and white cells dipped so low he went in the hospital and actually got put into icu for a few days. We thought we had lost him then. Then he started getting better and better and it worked for 1.5 years. Vidaza and all other treatments just did absolutely nothing for him. I do believe my dad and your mom are in Heaven and not having to endure any more suffering or pain.

Thank you everyone for the kind comments. It's been so helpful being able to turn to this forum in the last 3 years!

Jill and Ece;
My sincere condolences on the loss of each of your parents. Be thankful for all of the time you had with them, and know that they loved each of you dearly. I hope each of you find comfort in knowing that the forum was and will continue to be here for you - let us know how you are doing.
Take care.
Beth

Jill and Ece,

I am sorry for your loss. I too lost a parent to MDS this month. My mother died on Nov 13. She was very private while she was alive, so I never posted here. However, I got comfort and information from all of you - and I am thankful for your support. My mother never gave me the particulars of her MDS. I know she had refractory anemia - but that was all she shared. She was diagnosed in February. She tried five rounds of Vidaza and two months of Revlimid - but never got any better. She had had good blood work a year ago - so this seems to have come on quite quickly. In end, it was pneumonia which took her. She was 79 years old.

My only comfort is that she was not in pain except the last day. She was a brave soul and will be missed by my dad and her six kids.

Take care,
Danette

Danette,

I am so sorry for your lost. I believe that a day we will meet with our parents in heaven.

It is to hard take a breath without her for me. Because she was my everything. My dad has died 20 years ago. My mom did everything for me. I don't know how will I live without her.

I am very thankful for everyone's support. This form helped me during last two years. Everyone here are very helpful and kindest people. Thanks for all of you.

I wish healthful life for everyone.
Ece

I'm so sorry for your losses. Brenda

Danette,
I am so sorry for the loss of your mother. If she passed on Nov. 13, that is the exact day my dad passed.
Jill

Jill and Ece,

I hope we can provide support to each other in recovering from the loss of our parents to MDS. Thanks to everyone for the support!

Take care of yourselves.
Danette

I am so very sorry for all your losses recently. I know how hard that is. I lost my Dad May 3 2011. I know they are not in pain anymore and are living life with God now. May you all find peace and comfort during this really rough time.

Elaine