SusannaB: I am sorry to hear about your Mom's passing. My thoughts and prayers are with you and your family.
God Bless.

Janet

Susanna, I'm soooo sorry to hear about the passing of your Mom. I hate to hear she suffered the last month. All her life, my Mom has talked about she just wants to pass quickly and donate her organs to research. I hope this MDS doesn't drag out the suffering.

Mom went to Dr. today and her numbers are at freakin 7! 7 platelets and 7 RBC so she's getting platelets and blood today and we're going to try chemo tomorrow since her white count was over 3. Thank God for those that donate! The Doc talked to my sister today about Mom's DNR order and that we need to make sure we all understand. I just want to cry watching my active, go getter Mom going thru this. I guess I'm grieving as we go...

Bryan, your not the first I've seen going thru this with two or more family members, ugh! I'm glad you're getting to spend some time with her. I'm trying to spend as much time as I can with Mom. We just returned from a cruise (it was planned a while). I brought home some crud from the ship, I'm really sick so I won't get to see her this week I guess. I so wish she could have been with us on the trip.

PoshShorty, thanks for your continued presence on this board.

It is humbling and encouraging to see those going thru this that have such good attitudes and faith. God Bless and have a good week.

Susanna I am so sorry for your loss. I think the last month for my dad was the hardest too. I think of him almost every minute of every day but I would not bring him back to this world and the suffering he endured for anything in the world.

motorcyclegma it is my pleasure to be here. I still need this group even though it has been almost 5 months since I lost my Dad. I want to help others if at all possible. I felt alone alot of times during our year long battle with mds. Dad was also rcmd.

Susanna: I'm so sorry to read about your Mom. I hope you can move past her suffering, it's the beautiful memories to keep in your heart. Check in with us now and again, it's the people we meet along the way that give this journey meaning. Hugs!

WHERE is everyone? Nobody has written on here in almost a month? I guess I'm the needy one...

Poshshorty, I'm curious to know if its not too hard for you to share, how did you know when it was getting close to the end for your Dad? If I'm intruding, please disregard. Mom's white count is now 900 and I'm freaking out a little. She's suppose to wear a mask at all times, but of course, won't because she's too embarrased. I keep wondering how low can the counts go- If normal is 150-450K and she has less than 1000. I'm so scared with it being flu and cold season. They won't let her have a flu shot cuz she might get sick. At least the transfusions are keeping her other counts at bay.

On the good side, we had a nice 89th bday party for her and I'm taking her up on a B-24 bomber in 2 wks. She was a Rosy the Riviter during WWII, so this will be a treat! My son and I are going with her. Dr. said "do what you want" which also leads me to wonder if he thinks its any day now...

I'm glad the BD party went well. I knew Mom would be strong for it. as for doing what you want. I agree. Enjoy the time you have with Mom. None of us know what tomorrow brings. Hugs! BJ

Haven't posted in a long time. Hope everyone is doing well.
Dad had been doing really well and then just 2 weeks ago got another case of cellulitus. Fortunately, my mom caught it very early and he is recovering quicker than in the past. It did bring down his counts, but we are hoping they are getting back on track. Always scary when he gets sick, you never know how his body will react.
Dad just celebrated his 79th b-day in September and is looking forward to all the holiday gatherings coming up and the arrival of his 3rd grandchild. I'm 7 1/2 months pregnant with my 2nd daughter. He continues to tell his doctors that he lives for his kids and grand-kids. He will soon have one more to continue living for :)

Julie

motorcyclemama. think that is right lol hope so. Dad just got weaker and weaker and transfusions were no longer working. The dr told us on April 4th that we needed to stop transfusions since they were no longer working and to let nature take it's course. of course with no transfusions he went downhill really fast. She gave him a month and he lived 1 day short of that. The last couple of weeks his appetite really went down and so did his drinking of any kind of fluids. feel free to ask me anything hon. I am ok with that.

Thanks Poshshorty for sharing. Mom is very depressed as her younger, baby sister suddenly became ill and is in grave condition in Minnesota. They're talking hospice for her and we were just happy she made it thru the weekend.

Mom's counts were so low today it scares the crud out of me, .7 WBC, 6 red count and 1 platelets! Geez, no wonder she was tired. They are giving her 3 bags of blood and 2 platelets today. We're suppose to go back in Dec. for bone marrow biopsy to see if the chemo did anything. She did do a full round of chemo last week.

On the bright side, she was strong for her day on the B-24 bomber a couple of weeks ago. She was in the spotlight with TV stations and newspapers there. The crew treated her like a veteran. What a special memory. I'm making her a picture book for Christmas. New hope is she'll live long enough for my son's wedding in April. Mom's premonition is that she and her 2 sisters will all go together soon, dancing in heaven together...

hon I am sure the chemo is causing the low counts. have faith hon. I am praying for good results on her bmb next month! I really hate to hear about your aunt. I lost a brother the end of January and my Dad May 3 this year and basically lost my older brother thru no communication since my Dad passed so I know the feeling of alot of losses close together. Will pray that does not happen for you. btw please call me Elaine

Elaine, thanks for all your support. Glad to have your name too! Sorry for all your losses, that's a lot in a short time. We've had more ups and downs, man, this rollercoaster is a pain! My aunt made it thru and is now in an extended care facility (not sure if we're calling it hospice yet). Mom and aunt got to actually talk briefly on one of their better days last week. My aunt's spirit is up -- Mom's comes and goes.

Her counts remain way low even tho she got 3 bags of blood last week and 2 bags of platelets. Its really discouraging and Mom's so tired of the hospital visits. I'm sure you're right, it's from the chemo. We're done with that we think; waiting on appt for BM biopsy. Have a good rest of the week. Cindi

My husband who is 75 years old was first diagnosted in January of 2011 with myleofribrosis. By March he was transfusion dependant and has had two units of blood each week; except for three times, since than. His red counts fall from 6 to 7 before transfusions. His white count has been increasing and yesterday was 21.5. He was given hydrea last June and needed a transfusion in four days. He is diabetic and suffers from other issues.
He has grown weak and can hardly walk.
We did go to Barnes in St. Louis for a second opinion last May. They agreed with his local doctor. Today, we meet with his doctor who wants to discuss a new drug which is just now abailabe. I fear for the side effects; but think I need to let him decide what he wants to do. How have you all managed with all the issues?

Hello, my mom is 89 and has been suffering with this disease for 7 mos or more now. Today, we are at the hospital for a high fever, 102 and terrible cough. I think we're nearing the end of her journey, but still hoping. Mom was a fighter and wanted to try the chemo, as that was her only hope. We did 4 rounds and now she's sick and tired of dr. visits and sick & tired of being sick & weak.

Its tough, your husband will need to decide if he wants to try to fight with the new drug (what is it, by the way?). I'd love to know. We still wonder if we're getting the best care.

Its important to have a positive attitude and good family/friend support system. I wish you well.

I'm so happy to find this group. Sometimes I go into the bathroom and cry. Other times, I'm sad to say, I lash out at my MDS effected husband. He was diagnosed almost 2 years ago but WOW did he get slammed with the fatigue about 2 months ago. He is on Procrit and iron but in May when he was offered Revlimid, he turned it down. But I'm confused - now I see Revlimid is for people with Chromosome 5 anomaly. His is normal. His problem is Chromosome 7. I'm rambling sorry! Have no idea what to do for him - or me either.