Posted on 03/26/2007 3:27:31 PM PDT by paltz
A cancer victim has accused his sister of condemning him to death by refusing to donate her bone marrow for a life-saving operation.
Father-of-three Simon Pretty is likely to die from leukaemia within months unless he receives a transplant.
His sister Helen, 43, is a perfect match but he says she has turned down the chance to save his life. Without the donation Mr Pretty – who has a rare tissue type – could be dead by the end of the year leaving his wife Jacqueline to raise their children Rebecca, eight, Jack, six and Benjamin, three.
he human resources manager from Mobberley, Cheshire, is receiving aggressive chemotherapy in an attempt to stay alive long enough to find another donor.
What a donor has to go through Doctors have said that to have the best chance of survival he must find a match by the end of the summer.
He has already exhausted the UK bone marrow register and doctors are looking for a match from strangers on international databases.
"I am on death row," said Mr Pretty. "I can’t believe that she would let my three children lose their father so unnecessarily by her actions.
Helen Pretty has declined to comment "We found a prayer in Rebecca’s coat which said: 'Please don’t let my daddy die from cancer'. That brought tears to my eyes."
Helen Pretty’s Cheshire home is less than ten miles away from the British Transplantation Society which campaigns to promote organ and bone marrow donation.
Her brother claims she agreed to be a donor after he was first diagnosed with the rare cancer, acute promyelocytic leukaemia, in July 2004. He went into remission but then suffered a relapse in February by which time she had changed her mind, he says.
The pair have never been close although their children are similar ages and play together.
Mr Pretty’s wife Jacqueline said: "It is appalling that Helen can stand by and watch her brother die knowing that she could do something to help him. The past few months have been hell."
Mrs Pretty approached her sister-in-law in an attempt to change her mind but lost her temper and was eventually arrested. No charge was brought.
Jacqueline Pretty said: "She opened the front door halfway and I told her that things were desperate and the children thought their daddy was going to die. She said 'Sorry, I am not doing it'. I asked her to give me a reason and she said 'I am putting my family first'.
"I explained that there were no risks involved. I was so upset and I said, 'Don’t you care if your brother dies?' She said 'It’s very sad', and smirked."
The family then received a letter from his sister’s solicitor asking them to keep their distance.
Parent governor Helen, 43, declined to comment yesterday.
She runs a private education business from her £380,00 home in Wilmslow, Cheshire, which she shares with her partner and her daughter, eight, and son, three.
Mr Pretty, who has two masters degrees, is studying for a PhD in industrial relations while being treated in hospital.
He said: "The treatment is tough and it is tortuous to go on with, especially as it would be unnecessary had she come forward. I have had a skin full of chemotherapy and all the side effects but I have a young family and I have to keep my spirits up for them."
Mr Pretty said he hoped that his plight would highlight the lack of bone marrow donors in the UK. He added: "Some people do not have a family member who is a match, even one who will not co-operate."
A spokesman for the Anthony Nolan Trust, which has a database of potential UK bone marrow donors, said: "About 30 per cent of patients could get a match from their own family – usually siblings.
"The chance of finding a match outside of family is very small and there are never enough donors."
A less than exact bone marrow match has a smaller chance of beating the cancer.
Trust chief executive Dr Steve McEwan added: "As with any medical procedure there are risks. However, we are not aware of long-term side effects of the process of donating bone marrow. Donors describe it as a very positive experience."
"For the recipient, they need to be sure they have a good donor, because once they do their bone marrow is entirely killed off. They will die without the donation: so it is important for the donor not to "chicken out" (they always have that option). It is an irreversable decision for the recipient." Yikes! I didn't know that! Scary!
I'm surprised the marrow registry isn't international. I just assumed if I was on a marrow registry, any doctor in the world would have access to that registry. Not so?
> Yikes! I didn't know that! Scary!
Yeh, apparently they have to kill off all the diseased marrow in the patient so that the good marrow can "take" properly. So for a while the patient will be without marrow at all.
Once that happens, apparently, the clock begins ticking, and they like the donor to be *real sure* it's a "go" because there will not be enough time to find another suitable match.
Still, the donor can chicken out at the last moment. After all, it is a freewill donation and they can't very well tie you up and take it from you against your free will.
It was one of the first things that they carefully explained when I registered back in 1991. They gave us an info pack, then sent us home to think about it and talk it over with our families. From the time you agree to become a donor, the system begins to incur costs for tests and for record-keeping -- hence the reason they like to be reasonably sure this isn't just a passing fad.
We then had to attend a second seminar a few days later to actually sign up for the first test.
Back then, the match was done in two passes, for cost reasons (the second test is quite expensive). The first test will give an indication as to whether you are a close match: if so, you're called in for a second test that goes into much closer detail.
Around about that time, they'd prefer you didn't chicken out, both from a cost point of view as well as from the point of view of setting up false hopes with a patient who will otherwise die.
I was a close match once, so they did both tests. Unfortunately, not quite close enough.
Marrow is given to the patient intraveinously, where it finds itself by magic into the right places in the bones, and re-grows. They don't need much at all, apparently: the donor has more than plenty and it grows back in a short time.
> I'm surprised the marrow registry isn't international. I just assumed if I was on a marrow registry, any doctor in the world would have access to that registry. Not so?
I was surprised, too -- when I immigrated from Canada I naturally thought that the NZ blood service could access my records automatically. Not so. I then inquired as to whether my records could be copied over from Canada to NZ -- again, not so. The Red Cross sent me hardcopies of my records and, I believe, then removed me from their system. It was felt impractical to have donors half-way 'round the world.
It then worked out that the NZ system is geared toward keeping donor records for Maori and Pacific Islanders, as opposed to the rest of us -- the donor pool for them is fairly small from a world viewpoint, whereas the donor pool in Australia for the rest of us is deemed to be adequate.
And, naturally, in any marrow transplant they will always go first to the family as the likelihood of a near-perfect match is much higher than in the "unrelated" donor community.
Hmmmmmm....I signed up several years ago and can't recall any specific tests at all. I think I might have had a blood draw -- so I assumed they did something with it. But I haven't heard anything since -- other than newsletters and requests for monetary donations. I sure hope I'm in the system!
Nailed it.
>> The important fact is that the sister MAY refuse. Leftists want to install a situation where she would be forced to donate, and it should be the goal of those on this board to prevent that from happening. The Evil sibling is less important than the Evil government.
> Nailed it.
I'll start by stating I do not support compulsory donation -- but the question raises a coupla interesting ethical points:
1) Voluntary donation of organs &tc after death. You have made your wishes known before your death to donate. Family and/or "interested persons" disagree. Whose will should trump whose? (This debate is happening now in NZ with an attempt to establish a central registry for willing donors. Currently doctors, nurses, family & friends can and do trump your will)
2) Why shouldn't donation be compulsory? There are plenty of things in life that are:
- you are compelled to give a breath sample whether you are guilty or not when the cops pull you over
- you are compelled to give an evidential sample of breath and/or blood if the first test fails
-if you are in a car accident and bleeding, they will take a blood sample for evidential purposes before they start treatment if alcohol is suspected to be a factor
- the coroner will perform an autopsy on your corpse if cause of death is suspicious -- whether you wanted one or no
- one way or another, your corpse will be disposed of somehow upon your death: your range of choices does not permit you to allow your corpse to rot out in the open
- plenty of times the Government has decided to Draft able-bodied people into the Armed Forces, where you will potentially donate 100% of yourself for as long as your term of service is: and that might just include getting blown to smithereens
- each year the various levels of Government dip their hands into your pockets and appropriate money from you by way of taxes: and these taxes take priority over every other spending that you do, including subsistence
We already don't own 100% of our bodies all of the time, nor do we own 100% of our possessions all the time, and haven't for many years.
So conceptually why *not* declare all organs from everyone to be public property for transplant purposes once you are dead?
And why not compel every competent adult who is able, to donate blood and marrow at least once per year, as a tax or a national service? (Naturally, some narrow exemptions to apply for medical or religious reasons).
I don't see that these concepts are particularly "Rightist" or "Leftist" -- they happen under governments of all stripes already. They may be odious concepts to some but I believe this odium spans the political spectrum.
You are a fairly young person in good health, aren't you?
> You are a fairly young person in good health, aren't you?
Mid-forties, hi-blood pressure (treated by medication). Reasonably good health, and an organ & blood donation volunteer.
Like I say, I don't support compulsion -- I'm just curious as to why some folk think it's automatically a bad idea.
I don't support compulsion because it takes away a perfectly good opportunity to volunteer: if it were compulsory wouldn't have the special "feel-good" buzz. It would become a duty rather than an unselfish (and anonymous to the recipient) gift.
That said, given NZ's pathetic donor rate (we freeload from Australia for this and too many other things) I think a bit of compulsion probably wouldn't hurt.
Call me crazy, but I don't know which camp on this thread has turned me off more, the ones who are calling the sister a bitch without knowing one iota of the truth of the situation and why she might be hesitating, the camp that thinks she's a lesbian and therefore deserves extra contempt, the camp that thinks it's ok for a man to air his family's dirty laundry and attempt to shame and coerce his sister through the worldwide media, or the camp who thinks that when it comes to surgical procedures for the benefit of others, it's ok for government to compel them "a little" (we all know how that ends up).
My main objection to the entire story is the belief that because something can be done to save his life, it must be done, and that the sister should be demonized if she does not wish to supply body products to her brother. What about saving his soul instead, and relying on faith and prayer for an intervention, instead of desperately ruining his sister's reputation?
What if her brother has not known or cared if she were alive or dead for months or years at a time, and then he or his wife showed up making demands instead of a humble request, such as for prayer, which might then have led to a gentle change of conscience instead of an attempt to force her hand? He is demanding that she also risk her life and health, even though she is unmarried and has the responsibility of children of her own. If I were the sister, I think it would take a miracle to change my mind after having my name dragged through the mud.
> Call me crazy, but I don't know which camp on this thread has turned me off more, the ones who are calling the sister a bitch without knowing one iota of the truth of the situation and why she might be hesitating, the camp that thinks she's a lesbian and therefore deserves extra contempt, the camp that thinks it's ok for a man to air his family's dirty laundry and attempt to shame and coerce his sister through the worldwide media, or the camp who thinks that when it comes to surgical procedures for the benefit of others, it's ok for government to compel them "a little" (we all know how that ends up).
You're not crazy -- I definitely see where you are coming from: each of those themes have played out on this thread.
Speaking personally, I think it makes an excellent case for a robust VOLUNTARY and ANONYMOUS unrelated donor program.
Because it is cold to refuse to donate lifesaving material to a family member (particularly when it is so easy to do), it's difficult not to conclude that there is much more to this story that is not being told.
Best for all parties that can be done is for an unrelated donor to be found, and for him/her to donate.
Nobody likes to be told they are going to die, that they are mortal (tho' 100% of us are) so his reaction can be understood at some level. Hers can't be because her story hasn't been told: maybe she wants her privacy because her side of the story might be painful and embarrassing. He may not be a saint, he may not be worth saving...
Always dangerous to take sides in family quarrels! Not all families are The Brady Bunch or The Waltons.
Look to communist China for a view of the future of compulsory organ donation.
> Look to communist China for a view of the future of compulsory organ donation.
I'm far more worried about Capitalist China: they are a scary bunch! And they are more likely to make money out of the venture. "Communist" China is and always has been a scam: one Dynasty merely replaced another. Consider:
One of the parents of my wife's students is from China. Her husband owns a factory that is -- literally -- a small town: stores, apartments, a hospital, a factory: everything. The make metalworking tools: lathes, drillpresses, forges, milling machines, &tc. Very hi-quality stuff: I bought some off them direct.
I once asked her about "what was life like was under Mao Tse Tung: you know, the Cultural Revolution, the Red Guard, &tc?"
"Marvellous! There were cultural events, and vacations in fantastic resorts, and music and dancing." And she showed me a photo album to prove it...
"But... but...but..." I stammered. "What about..."
She smiled and answered me "I am a General's Daughter. You see, we do not mix with the Workers."
True story. It happened in her living room, and we were sipping very expensive green tea while her daughter had her music lesson from my wife.
As I said, compulsion is neither a Right-or-Left issue. Just like Fascism and Socialism are opposite sides of the same coin, and both totally Evil.
Compulsion drives either Right-or-Left agendas when these are driven at either extreme.
Or maybe he feels he has try absolutely everything to change her mind, so his children won't feel as if he's not trying his hardest to stay alive and continue being their daddy.
Just a thought....
My sister would have done the same to me, if she would have the chance to. She hurt me enough physically and emotionally growing up that I have completely severed all ties with her.
If that were the case, would he let his children play with her children?
Hey, maybe she was using it!
I use to be a plasma donor. I am no longer an eligible donor since I have diabetes and hypothyroid.
I would have gladly donated to a complete stranger if I were eligible.
Would it be wrong to suggest that a donor should have their funeral expenses taken care of? Each person who benefits from the procedure could give a percentage towards the donor's final expenses.
She already agreed to help him. He was counting on her and she has reneged on her promise. I would be terribly hurt if that happened to me. Especially since he has small children he would like to be around to provide for and to see grow up.
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