[JAGGYONE]

Hi,

My husband is losing weight every week. The doctor believes it’s the result of his graft-vs-host disease. He doesn’t eat much now but even when he did, his weight kept going down.

We got some really bad news last week. There’s nothing more that can be done and it’s just a matter of time now. He had a bone marrow transplant in August ’04 and was doing so well with 100% donor marrow. Then, things started to turn around and now he has 20% of his own cells back (the ones with the chromosome abnormalities).

He wants to travel and the first place he is hoping to go is to Disneyland with our 5-year-old grandson. I know how badly he wants to make this trip but I see the way he is every day and can’t imagine it happening. He slept all day yesterday and couldn’t get out of bed to go for his scheduled blood work today. He also hasn’t eaten anything but an ice cream shake in days.

He went through so much in the last 3 years and it’s hearbreaking to see it end this way.

I think about each one of you with hopes that good things and healthy times lie ahead.

Judy

[JAGGYONE]

Amanda,

It seems that MDS knows no boundaries – age or otherwise.

I think I can speak for most everyone here (where age doesn’t matter) when I say that you will find a whole world of new friends willing to help in any way they can on this forum.

You’re young and strong so please stay hopeful and believe (with all your heart) that better days are in store for you.

I wish you the best of everything.

Judy

[JAGGYONE]

Bill,

Happy 14th birthday to your son and what a special one this must have been! I believe that Billy is destined for miraculous things in his lifetime. I wish him good health, great adventures and happy times always.

Congratulations to his donor’s family on the birth of their new baby.

It seems like wonderful things are happening all around you now.

You made me smile this morning.

Judy

[JAGGYONE]

EParry,

I am so sorry to hear about your Dad. It’s hard to find the right words to bring you comfort at this most difficult time.

Please know that my thoughts are with you. I, too, hope you find the answers you need.

I wish you all the strength and courage you need to get through this now.

Hugs,

Judy

[JAGGYONE]

Theresa,

I am so sorry for your loss. It is sad to know that after fighting and winning so many battles, the war has been lost.

May memories help comfort you at this most difficult time.

My thoughts are with you and your family.

Judy

[JAGGYONE]

QQ,

How wonderful that you received such good news!
I am very happy to hear you’re a match for your sister. You will be giving her the best possible gift there is – the gift of life.
My hopes for everything to go well will be with you and your family.

Judy

[JAGGYONE]

Sarah,
Reading your story has touched me very deeply. My husband had a BMT in August 2004. We felt so blessed because we found a non-related donor (9 out of 10 match) within a few months of starting treatment at Sloane Kettering in NY. He was doing well until a major setback (not related to the BMT) happened almost a year ago. The lastest news is that his own cells (the bad ones) have begun to show up in his marrow and now the doctors feel that they have tried everything they could. Every medication he gets that fixes one problem causes two others to occur. They are talking about the possibility of a boost from the donor but that won’t cure anything – only help keep his counts up. He’s dealing with that as well as graft-verses-host-disease. I haven’t come across much about GVHD here. Is anyone experiencing this horrific side effect? The bottom line is that they are now trying to maintain his quality of life (albeit very poor) for as long as he chooses to continue his fight.
It’s heartbreaking to see him so down day after day believing there’s no hope for a cure any longer. I just feel so helpless.
I wish you strength and offer you prayers and sympathy in your time of great loss and sorrow.
Judy

[JAGGYONE]

Jack,
I, too, thank you for those words. I spend a lot of time thinking about life without my husband.
I listen whenever he wants to talk but never really thought about the things he doesn’t say. I know that he’s more afraid about leaving me alone than he is about dying.
I came to this forum as a caregiver, looking for some support and understanding for myself. I have since gotten that and, thanks to people like you, more insight than I ever expected.
You are truly an inspiration.

Judy

[JAGGYONE]

Brenda,

My deepest sympathy to you and your family during this difficult time.
Stay strong and try to find solace in knowing that your Dad isn’t suffering any more. He will live on in your heart forever and be with you always.

Judy

[JAGGYONE]

Jimbob,
In the midst of so much uncertainty, it is so wonderful to hear of your success. I wish you continued health, strength, courage, love and happiness year after year after year. Stay well and enjoy all that life has to offer. Congratulations!
Judy

[JAGGYONE]

Sherrygal,
I just saw your post and was saddened to hear of your loss. May memories help comfort you in your time of sorrow.
Stay strong and remember that what the heart once had, it will never lose.

Judy

[JAGGYONE]

THANKS SO MUCH FOR YOUR PRAYERS AND WORDS OF ENCOURAGEMENT. WHEN WE FELT THERE WAS A LIGHT AT THE END OF THE PROVERBIAL TUNNEL, IT WAS A LOT EASIER TO GET THROUGH ONE DAY AT A TIME.
NOW, WITH THINGS SEEMINGLY GETTING WORSE EACH DAY, IT’S NOT THE SAME. BEFORE, HE WAS WILLING TO UNDERGO ANY TREATMENTS OFFERED, BUT IT’S BECOME A STRUGGLE JUST TO GET HIM OUT OF THE HOUSE TO GO FOR LAB WORK. I CAN’T EVEN IMAGINE WHAT IT MUST BE LIKE TO BE ON THE VERGE OF DECIDING THAT LIFE ISN’T WORTH LIVING.
YOU’RE ALL PART OF SUCH A SPECIAL GROUP AND JUST KNOWING THERE’S SOMEBODY ALWAYS WILLING TO LISTEN MEANS SO MUCH.
THANK YOU FROM THE BOTTOM OF MY HEART.

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