Dear Captain Chris,

I did it! I finished my Animal Care course wih flying colours! I'm getting assistance now from the government to pay my bills and things while I can still only do a bit of work. But, I finished it - completed my goal and I am so happy that I have achieved it because I almost gave up. Just wanted you to know! Luv Jules

And everyone, I do think about you often and your different struggles. Hope you find the strength to continue through, even if at times you feel like there is no hope. You never know what pleasant surprise is around the corner. Thanks for listening to me and being there, even if I'm not around much.

My platelets are still low but no major bleeding issues to date. Blood counts are taken once a month to keep an eye. But the rest of the time I try and forget about it. My transplant Dr seems to think they can find an even better donor match, so I feel quite confident for the future. I trust them.

xoxo Jules

Well, shoot. I posted yesterday, but it seems to be among the missing. Just wanted to say to Posh--stopping extraordinary treatment to stay alive is certainly not suicide in my book. I hope your dad is listening to you.

My Hgb was up Tuesday, 10.6.

Hope everyone had a wonderful Thanksgiving (at least the Yanks among us).

wow! congrats on the numbers. Dad is still undecided about what to do right now. now the transfusions only make him feel decent for about a day

Jules, I congratulated you in my missing post, but neglected to do it again. I'm thrilled that you achieved this goal. I also love it that you actually told Cap'n Chris about your success. Neat-o!! I see him giving you a thumbs-up.

how is everyone doing? long time no see!!

Posh, you didn't tell us how your dad is doing. As for me, I was astounded to visit my oncologist yesterday & learn that my Hgb was at an all-time high of 11.3, up from 10.6. Only 3 months ago, it was 10.1.

So maybe becoming a grandma again yesterday is good for my health--we proudly announce the birth of our one & only granddaughter, Faith Andrea. Woohoo!

Birdmom,
How wonderful to have another grandchild and Faith is such lovely name. I think that you might be right about it making you feel better. One case I can talk about is about a man who had lost his will to live. His family and medical practitioner honestly thought he would not survive, but after his daughter fell pregnant his attitude suddenly changed. I was told it gave him the sense that he would be needed again. Not only did his mental approach change but his physical illness improved. I met him recently and he is the most vibrant charming gentleman who just adores his three grandchildren.

Last night we had our MDS telephone forum and on line was a guest MDS specialist. A question was asked by one of the participants about how her Hb would go up without any treatment. The specialist spoke about the bone marrow producing both good and bad cells. The good cells produced hunt down the rogue cells that cause the issues we have. I am talking in laymans terms of course so an apology to those who are medically trained.

Im ok at the moment. My Hb is at normal levels now (120) and the white cells are still low but are not decreasing. The platelets are in the 90s and havent increased yet. The third cycle of Revlimid was a little tough as the fatigue returned along with a rash and mild bone pain. Im on my fourth cycle now and am feeling better than I did with the third cycle. Revlimid has definitely worked for me and after last nights forum I believe my MDS will be treated with drugs for many years to come and that BMT will be an unlikely outcome in the short term. I dont like the idea of being on drugs for the rest of my life but Ill just have to learn to accept that fact.

I wish you all a very Merry Christmas and a Happy New Year. May 2011 bring you all improved health and happiness.........oh and a cure would be nice too.

Best Wishes
Rachael

dad is still hanging in there. he gets a port finally! he goes in tomorrow mornging to get it. plts are really low. 11k yesterday. got one unit and will get another friday along with 2 more blood. he is growing visibly weaker though. not sure how much longer he can hang in. congrats on the new granddaughter! I will be having one in March! woo hoo!

Hey all, Chemo last week after the family all being in the week before and one set of grand kids here over the weekend led to mucho fatigue but am starting to pull out of that. Counts for me were up slightly before the chemo. I'll have labs again Monday in prep for a transfusion to help me keep up with everyone over Christmas. I've given in to all the nurses and Mama and agreed to get a port (they do have a heck of a time getting IV's in and last week made 95). I'm trying to work it all to happen the first part of next week but will have to see as my platelets will be low and I'll need a transfusion of those as well. I go to day surgery for both so we'll see.

Posh it sounds like your Dad is still trying to hang in there and that's a good thing. Congrats to all on new grandbabies they are one of God's best blessings.

Have some fun this week everyone.
Mike

mike Dad got his port today finally! they had to stick him 6 times to get 2 lines in! so it was a good thing for him to get one! good luck with yours! he had to get plts while they were doing the procedure though.

Since mid october or so he has had 16 units of plts! yikes!

well Dad had to go to the ER this morning for a bad bleed. they got it stopped but they have him on 4 ltrs of oxygen with not alot of luck getting it back up. they have admitted him and I will be headed back in just a few minutes. Please keep him in your prayers. His name is Royce. will try to keep you all posted as I can.

Poshshorty, I'm so sorry! Praying for your dad. Keep us posted.

My prayers are with you and your father poshshorty.

dad had a pretty bad bleed and they don't have it completely stopped yet. they were about to let him go home but found out he has conjestive heart failure so he is still there til whenever. tonight they signed dnr on him. not much they can do with him at this point but make him comfy and mild lasix on board. he is very swollen. please keep us in your prayers. thank you all so much for the support.

Posh you know that you and your Dad both are in our prayers. We can and will pray for his healing but we as your friends will also put him in God's hands. Billy Graham offers a prayer in one of his daily devotionals that goes. "You know what troubles me this day Lord Jesus. I now turn it all over to you in faith, know your love will never fail me." I say that prayer every night now not just for this day but for the days, weeks, months and eternal optimist that I am years ahead. You and your dad are included in that prayer every day.

God is with you and will bless you and give you the strength you need.

Mike