took Dad to the dr this morning. he has a huge blood blister on the inside of his mouth. I guess it is about the size of a half dollar piece. The dr gave us some pills to give him in case of a bleed and has now started him on them 2 times per day just in case. She also wrote the dnr order on his orders for the infusion dept at the hospital. She told him she is trying to keep him alive until my granddaughter is born in about 7 weeks. She said the platelets tranfusions are not working and he is getting the best there is. He is looking really tired now. I suppose I should post this in caregivers but I feel more at home with you guys here. hope that is ok.

Hey there Posh,

I would say you post wherever you want. You know you have freinds and caregivers here and certainly in the other group as well. We learn a lot from you and gain from the tremendous strenght that your showing. Hang in here with us whenever you get a chance. Your one of the leaky boat crew after all. We need all the rowers and bailers we can get in this ole leaky boat LOL.

We're hear for you and your in our prayers.
Mike

thanks mike! that means alot to me. I really pray for a cure of this nasty stuff. I hope to hang on to you guys for a long time to come!

Dear Leaky Boat Crew....

Together we help each other deal with the curve balls MDS tosses out. Stay strong....I'm feeling stronger every day and I keep watch on all your posts.

Posh - I keep praying for a good turn of events for you and your dad. I'm uncertain what turn I'm actually wishing for. I can only hope you can all move forward on his journey in peace with the knowledge that there are loads of us out there praying for your comfort.

Love & kisses

Gayle & Mocha

Gayle,
Thanks so much. Your one classy lady. As much as MDS has taken you through in your life along with the memories that reading more about it here must bring it is truley awesome to have your support, prayers and help with bailing the boat to keep it afloat. I believe Capn Chris would have told us that this "leaky boat" has nothing to do with wood and sails but is one made up of all of us both with this junk and those who care for us. When one gets a bit weak and a leak gets started all the others diver right in to help plug it up.

You've plugged your share of leaks here and it would be our loss if you were'nt hanging around to say howdy now and then and let us know how your doing.

I'm glad your gettng stronger. You've got the strength of our Lord and lots of great memories to keep you going in the right direction.

Have a great week,
Mike

Gayle you are to me an amazing woman! thank you so very much for your love and support.

Mike how are you doing my friend? thank you too for all the comforting words the last couple of weeks.

It was with a little trepidation that I read all the posts done during my absence, but I see that our crew is still fighting a good battle.

I had a good time, but managed to catch a chest cold, which began last nite after I got home. Sigh! I've been doing well on that score, but guess it's my turn.

So, Posh, a new life is to come soon for your family. Kinda what it's all about, eh? Didn't Cap'n Chris have blood blisters in his mouth too? Please don't leave us. Our leaky boat wouldn't be the same without you.

Gayle, I'm glad you're moving forward. Our caregivers are an important part of battling this disease, so I hope that you will be an inspiration to others. Give Mocha a big, wet, sloppy kiss for us.

birdmom did Chris have them too? I don't recall. I got here not too long before we lost him. thanks for that tidbit though. think I will look thru the forums on that one. thanks again hon. now you get well soon!

I read thru a bunch of old pages last night and found that Chris did in fact have blisters in his mouth but not sure if it said they were blood blisters but he did seem to have alot of nose bleeds. Dad hasn't started those yet. thank goodness!

Hi Posh, I'm doing fine. The last few weeks have been a drag I guess because of the chemo, port surgery and the difficulties with the port when they did the blood transfusion. Mentally, contrary to anything my family would tell you, I've been fine. Physically just fatigued a lot more. Off to chemo next week. I hope the port works all right. It was pretty painful when the blood leaked out under the skin. Got all the nurses excited for a good bit LOL. They accused me of just wanting more attention. I get no respect.

On your Dad's mouth sores subject. I'm on the chemo drug Dacogen which has a side effect of mouth sores. I don't remember what meds/chemo treatments your Dad or Chris are/were on but what your seeing might be a side effect of the medications vs something related to MDS. I did a new check of MDS symptoms and couldn't find any symptoms related to the mouth sores. I don't have them, other than the occasional cold sore that pops up and goes away fairly quick so can't personally relate for you.

Hope that helps some. Have a great weekend everyone.

Blessings,
Mike

Mikey dad had problems with his port surgery too with bleeding under his skin and thru the incision. a weekend in the hospital resulted. He is nor has taken any medications like the vidaza or anything. he opted for supportive care only. the dr said he is bleeding within himself and causing the bruising and blood blisters. no other mouth sores.

His nurses love him too which to me is a Godsend!
I hope you continue to do ok. my love and prayers are with you!

HAPPY VALENTINES DAY to all my leaky boat friends

ok guys getting kind of worried here. no posts in 4 days? everyone ok?

Posh, I'm okay but I'm trying to get over a bad cough. I need to get well or I will miss my grandbaby trip next week.

Saw the vampire Tues & my count was pretty good--10.7, down 0.3.

Hey there Posh,

I'm just chillin through ole chemo week. With all that went on in between this last time the fatigue just stayed in there so no catch up. Just a note my port problem didn't come from the surgery but something happened when the did the transfusion that it, the needle, eveidently didn't go in as it should have so the blood was leaking out of the port under the skin. I understand now what your talking about with your dad being on supportive care vs treatment.

As for the nurses, we have a lot of fun. One of them is from England and had two trainees in tow last time. She made it a point to tell them that she didn't talk to all the patients like she does me LOL. It's amazing though how things like the lunches show up, nurses come to sit with you and chat, and so much more that makes it more ok to be there. That goes for the Dallas bunch, the home cancer center bunch and the day surgery gang.

Have some fun this week, make some folks smile more than just the gang here that you do so well with and thanks for the thoughts and prayers.

Mike