This is the question I had to answer from the yougest of my three sons
who has been diagnosed last month with Ewings Sarcoma

I am so sorry to hear of his diagnosis. Please keep us posted on his progress with treatment. You are in my thoughts and prayers.

I'm so sorry, I cannot even imagine the pain you felt hearing that from your child. Know I'm thinking of you and yours, Pat

You reminded me of a few years ago when my phd was told by doctors that he had a major kidney infection. He didn't want to receive treatment for it. He said "I might as well die for this kidney infection now than suffer from HD for the rest of my life." In the end, the test results had been incorrect, but if they weren't he would never have gone for treatment. Unlike your son, he is now in his early thirties.

All the best with your son.



Edited 1 time(s). Last edit at 09/26/2007 06:16PM by Sally.

fantails,

what was your answer?

im sure you gave a beautiful answer... all parents here feel your pain.
and we wish you great strength.

susan

I think he should fight cancer with all he has, and be a cancer survivor...and then have the opportunity to be the first generation to have a cure for hd, it's right at our fingertips, wouldn't it be wonderful if he could be a cancer survivor, and an hd survivor? I think he is living in the right day and age that he might be able to fight both. But still, what a terrible hardship for your family, my heart goes out to you. Is it a very treatable cancer that he has?

I have also played with the idea what if? I got cancer would I seek treatment. I hope I would have the courage not to fight it. I would rather die from cancer than live with HD or rather my family live with my hd. I won't stop smoking and I won't take the high cholesterol meds my doc says I need. In a big way I am hoping something besides HD does me in
Just my thoughts,
Melissa

With all due respect, Melissa - not everything is preferable to HD!

My grandfather also refused to quit smoking. He'd lived his younger years as a healthy, vigorous, commercial fisherman.

He ended his life with YEARS on an oxygen tank. He'd take breaks from the oxygen tank (in order not to blow himself into the next county) - to sneak a cigarette.

He finally quit smoking by dying of emphysema!

Be careful what you ask for!

Very careful!



Edited 1 time(s). Last edit at 09/28/2007 02:43PM by JL.

Melissa, you still have so much to give to your husband, your children, and your friends! Don't give up now!!! The healthier you are now, the more you will benefit from treatments later.

JL,
I have been very careful about what I ask for and HD was not one of them.
I can already feel this disease eating away at my mind and cognative abilities, I feel the tremors inside. I see my aunt who can't talk but she knows what is going on so she sits and cries because she can't tell me what she wants to. I have seen my grandmother go through life with huge mood shifts and losing control of her executive functions and I have seen my sister commit suuicide.
So I do feel anything that may be a quicker death than HD is preferrable. My grandma is 80 her sister with HD 86, they have lived so long it is killing the caregivers. I so do not want to put my family in that position I have even thought of taking my own life when I get older and still have my mind. My husband loves me with all his heart but he has even agreed with my decision to suicide later in life.
What can I say, what I have seen is not what I want to live with.
Melissa

Well, Melissa - I certainly agree on the voluntary suicide issue!

I simply question whether smoking is a very efficient and painless way of doing that!

I'd rather take a pill.

Hey Melissa, just a thought about your cholesterol meds. My doc just put me on some, and she told me high cholesterol severely increases my chance of heart attack and stroke. But she also said, but worse than that, it makes my hd worse. She said cholesterol blocks blood flow in the brain too, so if i dont take the cholesterol meds, i will be making my hd much worse, much faster. I'm not sure that you want to make your hd worse do you? I understand maybe you dont want to carry on, but don't you want to at least hold your hd at bay? Take care of yourself, so you can have a good life, and maybe a cure for hd, maybe real soon.

michelle,

i know this sounds stupid, but i feel it in my bones, a real treatment is close, two years, what do you think?
i think it will treat symptoms and prolong life. come on michelle join the "hope boat"...
we've got to hang in there !!!
i dont want to celebrate without you !

I did have hope?I think it is all gone now though. I have read things that MIGHT work and if they did it would take YEARS before we could use the treatment. We don?t have years. My hope has slipped away for the last four years.

robert it can't kill you to believe, but it can kill you to give up. lift your spirits robert, there are so many eggs in so many baskets, eventually one has to hatch. couple more years robert, no more.

maybe nothing will ever work... all the more reason to squeeze every precious moment of joy, you can out of your life. am i right?

make some time for hope. have some faith. time is plodding slowly forward, but its plodding... glass half empty, glass half full, you choose...







Edited 1 time(s). Last edit at 09/29/2007 12:49AM by skmf.

Thanks skmf for the cheer up, I'm just down.

Hey Robert, i get down too, and lose hope, and others tell me it's ok, you don't have to be strong all the time, and you will be ok. When i lose hope, i let others hope for me, until im able to again, that's what friends do, pick each other up. Rest easy Robert, you have a wonderful little boy, enjoy him. Try not to worry about tomorrow, let the researchers do that. I know sometimes hd feels scarey, sometimes i get scared. I dont get as scared as i used to, and when i do get scared now, it doesnt last as long. Time is not our enemy, its our best friend, because with time, whatever fears we have today, usually feel much better on a new day. And there is hope, in memantine and so much research news last few weeks. You will be ok.

My sister spent most of her life looking for HD in herself. Before the blood test that was how you handled a history of HD. So did I actually.
My sister finally got old enough with out symptoms to consider herself HD free.To celebrate she blew money on dental implants to replace the teeth she lost as a teenager. Due to her family doctor having a baby she missed a physical, and ended up beiing diagnosed with stage 4 breast and bone cancer. She had the best minds at Harvard working to her benefit, and a very active lifestyle teaching skiing in the winter and sailing on the ocean all summer. Her first lumpectomy the surgeon did a nice job, the seccond was ugly. She had radiation for the bone cancer.She was depressed and tired but simply kept on pushing herself.
She complained of pain to her Canadian oncologist who refused to order a scan saying it was arthritis. and her life went downhill at that point. She went down to Boston in so much pain that she hadaa scan at Harvard which showed that the bone cancer had spread. The wedding was joyous. Afterwards we realized that she excluded heerself from any pictures. The subsequent birth of the first male in two generations was lauded. He was christened right away.
The second onslaught of bone cancer ate her leg, and the radiation screwed up her nervous system.This is the point that my sister should have been hit by a car because she had nothing left which she liked to do.
Actually I was fundamentaly surprised that she chosse to fight cancer rather than swallowing some appropriate pills. She was equally surpirsed that I did not kill myself with the diagnosis of HD.
Her cancer meandered into her liver, she had chemo, lost her hair, and managed with horrible side effects. She died at home with her husband and family there.
So I think cancer is much worse than HD.
Dusty

Sorry guys I have no hope for a cure. Look at how much money Jerry Lewis has collected and still nothing. Nothing for cancer except maybe a little more time and if there was a cure would they admit it, drs would lose alot of money.
I haven't lost hope per say but I feel I am being real with myself. I am the kind of person that would rather be suprised with a cure than continue to be let down when it doesn't come.
I am going to do whatever I want in my life, I want to enjoy life as I see it. I'm not going to stop anything because it may or may not hurt HD sym. The docs are guessing. One day they say do this or don't do that and a year later they see it really didn't matter either way. When someone had VERY HARD evidence then I can respond. For now I think docs are just guessing about what hurts and helps people with HD. My doc says I am not affected by HD because I am too young. I KNOW that I am. He won't even give me adderal to help with my focusing problems... Whats a person to do, who can we trust?
I have accepted the HD and I live with it everyday I feel there is no point being elated about a cure that may or may not come. I feel I would fall in a deep hole if the cure wasn
t found and I believed in it, but that is just me.
If hope keeps you going you go for it, its just not a place I can go. I can only prepare to leave this earth when the time is right on my terms thats my cure for HD, it will not control me beyond what I let. I feel like in a small way I am not at the mercy of reseachers or HD, I have made another option for me.
My thoughts on a VERY complicated subject,
Melissa B

I know HD is hard but when I think it is as bad as it can be I know it can be worse if you add another devasting illness such as cancer, etc.

My father smoked and said if he ever got cancer he would not take radiation, etc. Guess what - at age 57 he got lung cancer, quit smoking,took two sessions of radiation and it gave him 18 more months. I can remember him being on oxygen and not wanting to go to bed because he was afraid he wouldn' wake up. It hurt not being able to help him. We love our parents very much.

For those of you contemplating means to take your own life, please think of those you leave behind especially your children. They would be devastated and what have you taught them?

We never know when medications that help or a cure will come. It could be this year - it could be a few years. Also, many cures for diseases are found when researchers are actually working on a completely different disease so the cure may come from someone not actually working on HD.

I know we all think differently but please have hope. I, too, believe
there will be a cure fairly soon. With the use of computers, trials and shared information it is just a matter of time.

What a party we would all have!!