Thanks Mike. Best wishes to all. I really miss Chris. When I first checked in here, thinking that I had MDS instead of AML, I got a long and encouraging message from Chris. A delightful couragous and caring person. I have some good news about treatment options beyond New Zealand. My Medicare starts on August first and I;m scheduled for treatment options discussions in California. A friend in LA sent me an email that says there is a car and a room available at his house, as long as I need it. My GP has spent a couple of hours talking to me and my wife outside of his practice hours. He calls just about every day. A welcome contact from a buy doctor who is also a loyal friend.
Birdmom, I just looked at a web page about your home town. What a delightful part of California to live! I would second the suggestion that you take the helm of the leaky boat.
Rgds
Jon

Hi everyone... and Birdmom! ...since u started us all on this journey of posting Sharon, maybe u should take the lead. But knowing too that each of us is as important as the next. Hope u are doing ok my friend. Just wanted to pass on a (((hug))) to you also, and thank u for your encouraging input.

Luv to everyone! I'm still struggling a lot with my living situation and wish I could just fly away from it all and ... I don't really know what. Thanks for being here guys. xx Jules

Jon, I suggest you look into the AARP supplemental "Plan J" to augment your Medicare. So far, through chemos, blood transfusions, bone marrow biopsies and other visits/labs the cost has been zero to me. The Plan J picks up deductibles, co-pays and any charges not coverd by any medicare approved treatment.

Hope that helps some. Have a great day everyone.

Mike

I'm doing fine after being tired & sleepy for a few days. Now I'm ready for anything!

I've had disturbing news. My 62-yr-old bro-in-law was sent to the hospital with severe bruising and hematomas, including one in his mouth. (First thing I thought of was Cap'n Chris, MDS, leukemia.) He was put in intensive care shortly after admission & has had some tests done.

Yes, he has leukemia, we've learned, altho we don't know which type yet. I'd say he's a pretty sick boy with a platelet count of 16. Looks like it's an aggressive form, but we'll see.

Strange that all along my little sis has worried about me, & it turns out that her husband is the one who gets it!

As to leading this crew, thank you for suggesting that I do that. As every one of you knows, no one can replace our captain. But I promise to continue supporting, as I know the rest of you will do also. We'll simply row our leaky boat together.

I saved #800 for Christopher. This one's for you, guy!!!

Any suggestions for caregivers? How can we be most supportive and helpful?

maybe we should also make a caregivers forum here? maybe a new thread for it?

being a caregiver for anyone ill is difficult. we are all in this together though right?

new leaky captain! I am so sorry about your brother in law! how terrible. last week my Dad's plts was down to 16 also. He was so weak I didn't think he would make it. funny thing this stuff is.....this week his numbers were stable! go figure! My prayers are with you and your family.

My bro-in-law (Bob) was transferred from Research Hospital in Kansas City to KU Medical Center yesterday. I hope that this means that they have more expertise in leukemia treatment.

It appears that he has the ALL form, called childhood leukemia. Anyone have any experience with that one?

About caregivers, it would probably be helpful to start a new thread just for that topic, but I would hope that we wouldn't lose ours, like poshshorty. Some of our crew are writing as caregivers, and this blend makes our leaky boat more seaworthy. What say the rest of you?

I feel like an outsider but have gained a lot from reading your posts-one and all. I cannot interest my husband in participating in any way. Up til now I have been stalwart and strong but yesterday felt more like raging, crying and shaking my fists. Do I think a group for caregivers would be helpful? Yes, yes, yes, yes

I don't think this thread would lose any of us caregivers! we are family right?

I think yes we need a thread for us too! let's do it! I will go start one now if it hasn't been done already!

ok guys and gals I started one for caregivers but of course everyone is welcome. it is called caregivers group.

Maryabell,

I too have a problem with my husband burying his head like an ostrich. But I continue to read this and other forums and keep trying to learn as much as I can about his MDS. I'm constantly researching and trying to learn ways to help him. It's comforting when we talk with the doctor to be able to understand what they are talking about. Being a caregiver is difficult, but I can't even imagine what our guys are going through, especially if yours has always been as active as mine has been. My husband just finished his second round of Vidaza last week and he's been very, very tired, probably more so than the first round. He's not one to sit and read, so he has to be satisfied with watching TV and being on the computer, when he'd much rather be outside working on his old antique cars.
We have 3 grandkids here for the next several days, so they tend to keep him smiling. Luckily his white counts are good, so the doctor said we don't have to be as careful about being around people and eating out, but we do avoid sick people. So as long as the grandkids are well, we love to keep them.
I'm going to be reading the new caregiver forum too, but will stay onboard here too so I can keep up to date.
God bless all of us - caregivers and patients.

I love your new photo Sharon! I'm sorry but I don't know anything much about ALL. Keep us posted...

Go the Caregiver Forum! I've been helping to care for my Dad with Muscular Dystrophy most of my life. And my Mum still is. I worry about her all the time. We need to care for our carers.

I was so saddened to hear about Chris. I knew he was very ill, but the news wasn't any easier to hear. My prayers are with his family during this most difficult time. Birdmom....I am so happy you have agreed to be our Capt. You will make Chris proud.

I just got back last night from my doctor appt. at MD Anderson. We drove this time as I met with the stem cell team to get the process of having my two sisters tested. It's a long 16 hour drive from here and we prefer to fly, but driving is not so bad either. We just take our time and spend one night on the road. I had a great report. I finally heard the word "remission" which I thought I would never hear. I know this is just a temporary thing but I will enjoy every minute I have while feeling well. Of course the blood transfusion didn't hurt that I had July 1 either. The stem cell department said I am not ready for a stem cell transplant and I knew I wasn't, but I want to see if there is a match out there for me if/when the time comes. I have lots of good information if anyone is interested. So....my appt. went well, I am home and able to get outside and living a good life right now.