Congratulations, Posh! I presume your dad got to hold her? She's a wee one like my grandbaby was. If Peyton is like Faith, tho, she'll soon be a big armful.

Rachael, your news is outstanding! It's so wonderful to know that you have a new lease on life.

mike I hugged and kissed her for us all today!

birdmom yes hon he did. she even smiled at him! sad though. he went home around lunch time and went to bed and was there at 10 or so this morning too.

Saw the vampire Tuesday, & Hgb went down to 9.8, bummer! Checked my records, & only 4 other times have I fallen below 10, & never since I started getting Aranesp every other week. Sigh.

Happy St Pat's, everyone. We're going to the traditional dinner at our clubhouse, & I will dance Irish-style with 7 other gals to the music Lord of the Dance.

are they going to do anything birdmom? I am assuming you are still watch and wait? I hope it goes back up! have fun dancing the night away! woo hoo!

Hello MDS family,

I hope everone is well. My hemoglobin is holding at 12.4 so I am feeling well.

Posh, congratulations on the new addition. Babies are a blessing and I am sure you family was very excited. I hope the occassion helped to lift your spirits some.

Stay well and many blessings to everyone.

LaDawn

Posh, I don't see my oncologist until the end of April. By then, maybe it will mysteriously start going up again??? It was funny on my last visit. I asked the nurse giving me my shot what my Hgb was, & she said 11. I was thrilled until she said, oh wait, maybe that was the other lady. Mine might be in the 9s. I said, nope, I should be 10 or above. Well, you see what happened next. Drat!

LaDawn, it's great to hear from you, & even better to know that you're feeling so well.

Posh, what's your dad's status these days?

Mike, are you okay? Long time no see.

Oh, my Irish dance was 3 minutes long. It went well, & we're all relieved that our performance is over.

bmom he is holding on. got 6 units of plts this week and 2 blood. he got to love on little Peyton for a few minutes yesterday again. he just smiles when he sees her,

Hey Birdmom thanks for checking on me. Hangin in there, blood counts stay low for most humans but steady for me. in the upper ones for the WBC. the red goes from the upper 7's to the lower 9's. Had a transfusion two weeks ago. Been able to go on Patriot Guard Rider escort for one of our fallen hero's and just got back from a couple of days with the grand babies. (took them to the local big flea market and had trouble loading the back of the van and still get everyone in LOL. That's what Papa's do. Next Monday have the Bone Marrow Biopsy test. Hoping like crazy that the blasts, if not improved, are at least staying in the 23% range.

Life is good as always

Howdy to everyone else
God Bless and have a great week.
Mike

Hi

My name is Ema . 12 yrs ago my dad died of MDS and now my Grandad was diagnosed today! I am reeling from such a RARE condition happening TWICE in my family! My Grandad is 91 so probably no treatment like my dad, just transfusions, 1st on Thursday and bone marrow test on the 30th March! Am upset worried and confused! Soooo much to deal with!!!! x x Hoping this support group can help! NB I am in the UK! x

Hi Ema,

I'm so sorry to hear about your Grandad and your Dad. You have come to a great group to get support. We are known as the leaky boat crew. You will find folks here that have MDS from all over, folks who are caregivers, folks who have recently lost loved ones to this junk, and some with loved ones that are fighting it but like your Grandad have reached a point that any kind of intense treatement is not an option.

It's a great group full of love, prayers and they will support you in any way they can.

Welcome to the crew.

God Bless and know you and your Grandad and family are in mine and the groups prayers.

Mike

Hi Ema....so sorry to hear about your Grandad. Most people think MDS is not genetic or hereditary and I'm not sure either. I just think since is rather a newer disease that it was not diagnosed a few years back. I had all the symptoms of MDS but was never diagnosed with such a simple CBC with differential until probably a year and a half later. I am 62, but MDS can strike even much younger. I think there will be so much learned about MDS now that there is the internet and support groups like this. I knew I had something very serious but was treated for so long with many other things such as anemia, iron shortage, COPD, heart problems and other things. I advise anyone who has anemia to have a CBC with differential to find out if it is low iron or something more serious. Like Mike said, we are all here for you and either have the disease or are a relative of someone who has it.
I had two units of blood today. I don't feel like I usually do after a transfusion and hope I have more energy tomorrow. I also have a light rash on both my arms that sometimes itches terrible. I am thinking this might be a symptom of the CMML (leukemia) and not the MDS. I am having transfusions about every 8-9 weeks. My white blood counts and platelets are good.
We are in so many stages of this wicked disease. I get down a little and then it's time for me to go to MD Anderson and I see little children and young adults that are suffering so much. I then realize how fortunate I am that my kids and grandchildren are doing well and I have lived a full life if anything should happen. I have my faith which also keeps me going. I am seeing a doctor also in the stem cell dept. for a bone marrow/stem cell transplant, but my doctors feel I am not there yet.
Hang in there everyone. Posh, I think about your father and everyone else in our group and pray for everyone.
Susan

Welcome Ema! I am glad you found this wonderful group. I am one of the caregivers here. My Dad has this nasty stuff and he is in the end stage. Not really sure what to expect from here til the end but winging it day by day. He is 81 and opted for supportive care only.

Susan thank you. I am seeing Dad grow weaker every week now. Despite having 6 units of plts and 2 blood last week his plt count was only 15k monday. his blood did not hold up well this week either. I spent the day with him today. I came home in tears again. His mind seems to be going too. He did not remember getting to hold Peyton the day she was born. He is getting really irritable too. Really sad to watch to say the least.

Posh, I know it has to be so hard to watch your father slip away. I have been with one who passed with MDS and he was at peace. If there are any benefits to having cancer, I believe this is one of the less painful ways to go. You have been a wonderful daughter and will never have any regrets. Your dad will finally be at peace and then will be time to celebrate all the memories he has instilled in you and the wonderful person he is. He obviously did a wonderful job with you as you appear to be such a caring and kind daughter. We will keep you both in our prayers.

Welcome to our leaky boat, Ema. I can see your distress about your dad & granddad both having been diagnosed with MDS. I felt the same way when I was diagnosed & realized that my dad died of it.

I warned my siblings to keep an eye on their blood levels, which is about all you can do. I asked my Dr about the genetic factor & researched the web. Some say yes, many say no. For those of us who experience it in a close family member, it looks like a yes to me!

Mike, keep us posted on your BMB results.

Posh, it has to be very difficult for you now. Maybe it's time to let nature take its course (sans xfusions)???

Susan, we're glad to hear from you, even tho your update is mixed. I didn't know about the itch factor--ugh!