Forum Replies Created
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KATHY1
MemberI am so sorry for your loss. My heart goes out to you all. May you find the strength to get through this very difficult time.
Kathy
MemberGreg,
While I’m glad that your mother is at peace with her decision and the rest of the family understands that it is problably for the best, I am also so sorry for the pain and sadness ahead for all of you. I hope you are able to find strength through the support of your family.As for how to tell your six year old – when it comes time you will know what to say. I have a 5 year old (as well as a 9 and 3 year old). When I told her a friend of mine had given me a book written by Maria Shriver which may be helpful. I myself didn’t read it to the kids though I did read it myself. I found my own words came out better.
My thoughts and prayers are with you and your family.
Kathy
MemberGreat Job Karen. You go girl! Count me in.
Kathy Brennan
Commack, NYMemberNaomi, I’m so happy for you. I can feel your excitement in your writing. Congratulations on your new granddaughters. Wishing you continued success with your treatments.
Kathy
MemberI got mine over the weekend. My nine year old daughter thought it looked cool and asked if she could wear one. Mean mom wouldn’t let her wear it until she understood what it stood for.
Kathy
MemberMurphy, I hate to be the first person to respond to your request because you will hear from many people who have had much success with vidaza. However, you did ask to hear the down side as well. From what I understand, and I’m sure someone will correct me if I’m wrong, vidaza kills off the cells good and bad obviously lowering all your counts. Which means higher possibility of infection during this time. The hope is that the cells will rebuild with fewer blasts thus increasing the counts.
In my mothers case she only made it through the first round of vidaza. She got an infection in her lung. Doctors think probably pneumonia. She passed away ten days later. Having said that you should also know my mother never wanted to live like a sick person. Right afer her last vidaza treatment she felt very sick-nausea and such. But when she felt better that same day she went to the local nursery to buy plants-not a good idea. I truly believe had she been more careful she would still be with us today.
Best of luck with whatever you decide to do.
Kathy
MemberTahoe, Glad to hear you’re doing well and going about life as normal as possible. Congratulations on Lily (did I spell that right).
Wishing you continued success.Kathy
MemberDawn, My parents were like that with my mom’s MDS also. She never even let us know how serious her illness was until it was too late. I know it was because she didn’t want anyone to feel sorry for her or treat her differently but if we knew more we could have done more. Mom’s gone for 7 months now and I miss her soooo much. I still cry thinking about what more I could’ve done. My suggestion is to do what you can and learn all you can now before it’s too late. Wishing you all the best.
Kathy
MemberThanks! I just ordered mine.
Kathy
MemberButch, I am so sorry for your losses. I can’t even imagine what you are going through. It’s going to be a tough road. Try to find comfort in family and friends and the memories you share. You are in my thoughts.
Kathy
MemberStill praying. I’m glad they took the house off the market. Who needs that stress during this time.
Kathy
MemberJohn, Just glad to hear you’re okay. I was wondering where you’ve been for so long. Thankfully your back and doing okay. Do whatever it takes to stay well, conventional or unconventional. God Bless.
Kathy
MemberI just want you all to know that since my mom passed away in October I continue to visti the forum and occasionally post as part of my grieving process. Through all of you I have learned so much more about this illness which has helped me get past the anger I felt toward her hemotologist. I know now that she actually was one of the lucky ones. She did not go through any horrible suffering. I thank you all for passing along your stories, your knowledge and perhaps most importantly your humor.
Kathy
PS. I still feel anger toward the ER doctors. I don’t think that will ever go away. I just deal with it.
MemberJody, Cool! I did it in 3 tries but the first time I got 0. Pathetic isn’t it?
Kathy
MemberLola, whew! You said a mouth full. Bet you couldn’t repeat it if you tried.
Tah, Haven’t heard from you in a while, welcome back.
Kathy
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