Guest guest Posted November 11, 2010 Report Share Posted November 11, 2010 Hi , A quick chime in - my sister went through 4 days of injections of neuopagen to increase her white cells. She experienced bone pain that she took pain medicine to manage it. She then spent 4 hours hooked up to two lines, one in each arm. She was such a trooper through the entire process. I know that she would not have ever turned away from helping a family member no matter what the cost. She has literally saved my life. God Bless, Jackie S. > > > > > > > Hi. > > I did hear the story. I believe one match was the > sister who didn't want to > > donate her bone marrow. I believe the news said that > the sister didn't want > > to feel any pain. I don't know how the sister can live > with her decision.It > > is really sad. Anyway, that is the one that I heard > about. I believe that > > the sister was a perfect match. I don't recall about 4 > other donors. The > > news channel focused on the sister. Is there another > case like that in New > > York? > > Sandi > > > > > > > > > > > > Did anyone else see the report on the news about > the FOUR donors who > > > refused to donate bone marrow to a woman on Long > Island, New York who > > then died? > > > This poor woman had only four matches in the > whole registry then all > > > refused to go through the procedure. Her family > is devastated. I missed > > the > > > beginning of the story and I don't know what type > of leukemia she had. > > Did > > > anyone else hear it? What type did she have? > > > in NY > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 I wonder, when you register to be a donor do they tell you about the procedure? A bit of discomfort is nothing compared to how wonderful you must feel to know you saved a life. How strange someone would register, then refuse to do it. When my grand daughter was 10 I asked her if she would be a donor for me if I ever needed it, and she said, sure Nana, as long as I don't have to have a needle!!!! Thought that was so cute. But she had her whole 5th grade pray for me to get into the STI571 trial and took full credit for me being alive for years. The best of everything to you Jackie, and Beth, you guys top my prayer list every day. Blessings, Bobby On Thu, Nov 11, 2010 at 6:40 PM, jackie schneider <jschneider008@...>wrote: > > > Hi , > A quick chime in - my sister went through 4 days of injections of neuopagen > to increase her white cells. She experienced bone pain that she took pain > medicine to manage it. She then spent 4 hours hooked up to two lines, one in > each arm. She was such a trooper through the entire process. I know that she > would not have ever turned away from helping a family member no matter what > the cost. She has literally saved my life. > > God Bless, > Jackie S. > > > > > > > > > > > > > Hi. > > > I did hear the story. I believe one match was the > > sister who didn't want to > > > donate her bone marrow. I believe the news said that > > the sister didn't want > > > to feel any pain. I don't know how the sister can live > > with her decision.It > > > is really sad. Anyway, that is the one that I heard > > about. I believe that > > > the sister was a perfect match. I don't recall about 4 > > other donors. The > > > news channel focused on the sister. Is there another > > case like that in New > > > York? > > > Sandi > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > the FOUR donors who > > > > refused to donate bone marrow to a woman on Long > > Island, New York who > > > then died? > > > > This poor woman had only four matches in the > > whole registry then all > > > > refused to go through the procedure. Her family > > is devastated. I missed > > > the > > > > beginning of the story and I don't know what type > > of leukemia she had. > > > Did > > > > anyone else hear it? What type did she have? > > > > in NY > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 I was wondering the same thing. Do they let the donors know what entails in being a donor? Also wondering the risks envolved that may scare people into being a donar. Karine MOM is 1366 in the zero club ________________________________ From: Bobby Doyle <rmcd1929@...> Sent: Thu, November 11, 2010 10:24:58 PM Subject: Re: [ ] Re: donors refused- I wonder, when you register to be a donor do they tell you about the procedure? A bit of discomfort is nothing compared to how wonderful you must feel to know you saved a life. How strange someone would register, then refuse to do it. When my grand daughter was 10 I asked her if she would be a donor for me if I ever needed it, and she said, sure Nana, as long as I don't have to have a needle!!!! Thought that was so cute. But she had her whole 5th grade pray for me to get into the STI571 trial and took full credit for me being alive for years. The best of everything to you Jackie, and Beth, you guys top my prayer list every day. Blessings, Bobby On Thu, Nov 11, 2010 at 6:40 PM, jackie schneider <jschneider008@...>wrote: > > > Hi , > A quick chime in - my sister went through 4 days of injections of neuopagen > to increase her white cells. She experienced bone pain that she took pain > medicine to manage it. She then spent 4 hours hooked up to two lines, one in > each arm. She was such a trooper through the entire process. I know that she > would not have ever turned away from helping a family member no matter what > the cost. She has literally saved my life. > > God Bless, > Jackie S. > > > > > > > > > > > > > Hi. > > > I did hear the story. I believe one match was the > > sister who didn't want to > > > donate her bone marrow. I believe the news said that > > the sister didn't want > > > to feel any pain. I don't know how the sister can live > > with her decision.It > > > is really sad. Anyway, that is the one that I heard > > about. I believe that > > > the sister was a perfect match. I don't recall about 4 > > other donors. The > > > news channel focused on the sister. Is there another > > case like that in New > > > York? > > > Sandi > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > the FOUR donors who > > > > refused to donate bone marrow to a woman on Long > > Island, New York who > > > then died? > > > > This poor woman had only four matches in the > > whole registry then all > > > > refused to go through the procedure. Her family > > is devastated. I missed > > > the > > > > beginning of the story and I don't know what type > > of leukemia she had. > > > Did > > > > anyone else hear it? What type did she have? > > > > in NY > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Yeah, like at the last minute maybe they say, " Oh by the way, you might die " or something. On Thu, Nov 11, 2010 at 8:51 PM, Karine Vallier <karinevallier@... > wrote: > > > I was wondering the same thing. Do they let the donors know what entails > in > being a donor? > Also wondering the risks envolved that may scare people into being a donar. > Karine > MOM is 1366 in the zero club > > ________________________________ > From: Bobby Doyle <rmcd1929@... <rmcd1929%40gmail.com>> > <%40> > Sent: Thu, November 11, 2010 10:24:58 PM > Subject: Re: [ ] Re: donors refused- > > > I wonder, when you register to be a donor do they tell you about the > procedure? A bit of discomfort is nothing compared to how wonderful you > must feel to know you saved a life. How strange someone would register, > then refuse to do it. > When my grand daughter was 10 I asked her if she would be a donor for me > if I ever needed it, and she said, sure Nana, as long as I don't have to > have a needle!!!! Thought that was so cute. But she had her whole 5th > grade pray for me to get into the STI571 trial and took full credit for me > being alive for years. > The best of everything to you Jackie, and Beth, you guys top my prayer list > every day. Blessings, Bobby > > On Thu, Nov 11, 2010 at 6:40 PM, jackie schneider > <jschneider008@... <jschneider008%40>>wrote: > > > > > > > Hi , > > A quick chime in - my sister went through 4 days of injections of > neuopagen > > to increase her white cells. She experienced bone pain that she took pain > > medicine to manage it. She then spent 4 hours hooked up to two lines, one > in > > each arm. She was such a trooper through the entire process. I know that > she > > would not have ever turned away from helping a family member no matter > what > > the cost. She has literally saved my life. > > > > God Bless, > > Jackie S. > > > > > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Yeah that could be. I need to look into this because I am planning on registering and I am planning on doing some research. If I can help anyone without dying since I have three kids to take care of I would do it in a minute. Karine My mom is # 1366 in zero club ________________________________ From: Rosen Lum <rrosenlum@...> Sent: Thu, November 11, 2010 11:56:14 PM Subject: Re: [ ] Re: donors refused- Yeah, like at the last minute maybe they say, " Oh by the way, you might die " or something. On Thu, Nov 11, 2010 at 8:51 PM, Karine Vallier <karinevallier@... > wrote: > > > I was wondering the same thing. Do they let the donors know what entails > in > being a donor? > Also wondering the risks envolved that may scare people into being a donar. > Karine > MOM is 1366 in the zero club > > ________________________________ > From: Bobby Doyle <rmcd1929@... <rmcd1929%40gmail.com>> > <%40> > Sent: Thu, November 11, 2010 10:24:58 PM > Subject: Re: [ ] Re: donors refused- > > > I wonder, when you register to be a donor do they tell you about the > procedure? A bit of discomfort is nothing compared to how wonderful you > must feel to know you saved a life. How strange someone would register, > then refuse to do it. > When my grand daughter was 10 I asked her if she would be a donor for me > if I ever needed it, and she said, sure Nana, as long as I don't have to > have a needle!!!! Thought that was so cute. But she had her whole 5th > grade pray for me to get into the STI571 trial and took full credit for me > being alive for years. > The best of everything to you Jackie, and Beth, you guys top my prayer list > every day. Blessings, Bobby > > On Thu, Nov 11, 2010 at 6:40 PM, jackie schneider > <jschneider008@... <jschneider008%40>>wrote: > > > > > > > Hi , > > A quick chime in - my sister went through 4 days of injections of > neuopagen > > to increase her white cells. She experienced bone pain that she took pain > > medicine to manage it. She then spent 4 hours hooked up to two lines, one > in > > each arm. She was such a trooper through the entire process. I know that > she > > would not have ever turned away from helping a family member no matter > what > > the cost. She has literally saved my life. > > > > God Bless, > > Jackie S. > > > > > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Perhaps we should keep in mind that everyone who agrees to be tested as a possible donor is assured that they can change their mind at anytime.  They, at the beginning, only agree to be tested.  They don't make a unqualified commitment to donate.  It's not like those potential donors commit themselves irrevocably at the beginning and nothing can change that.  That doesn't mean we don't have a right to our opinion on what people should do (especially people close to the afflicted).  We certainly are entitled to  judge them (on non-contractual grounds) for their ultimate refusal, it's just to say that we maybe don't know everything about the process and about the individual circs. (and character) of the potential donor.  And we may want to watch being too harsh--that can turn people off from even considering it. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Give me a break. 4 out of 4 potential donors refused. Something is just not right. Zavie Do you think that anyone of coach Talley’s boys or the hundreds of other students who joined the bone marrow drive would refuse to donate? Reread this to know what college students are being taught in the US universities. http://sportsillustrated.cnn.com/2007/writers/aditi_kinkhabwala/09/14/914/ Talley announced that Marcoux would never have to make another field goal to be the best kicker in <http://sportsillustrated.cnn.com/vault/topic/article/Villanova_Wildcats/1900-01\ -01/2100-12-31/mdd/index.htm> Nova history, and the ensuing stories meant the coach's " pet project " suddenly exploded. First the Temple Hospital Transplant Unit called. Then the Transplant Assistance Fund. They wanted Talley to try to sign up 1,000 people, and all the coach could think was, We don't get 1,000 people to our spring game. So he called his colleagues in <http://sportsillustrated.cnn.com/vault/topic/article/Philadelphia/1900-01-01/21\ 00-12-31/mdd/index.htm> Philadelphia, <http://sportsillustrated.cnn.com/vault/topic/article/University_of_Pennsylvania\ _Quakers/1900-01-01/2100-12-31/mdd/index.htm> Penn coach Al Bagnoli and <http://sportsillustrated.cnn.com/vault/topic/article/Temple/1900-01-01/2100-12-\ 31/mdd/index.htm> Temple coach <http://sportsillustrated.cnn.com/vault/topic/article/Al_Golden/1900-01-01/2100-\ 12-31/mdd/index.htm> Al Golden. He called the head coaches at UMass and <http://sportsillustrated.cnn.com/vault/topic/article/Maine/1900-01-01/2100-12-3\ 1/mdd/index.htm> Maine, <http://sportsillustrated.cnn.com/vault/topic/article/New_Hampshire/1900-01-01/2\ 100-12-31/mdd/index.htm> New Hampshire and Northeastern, and every one said they'd do what <http://sportsillustrated.cnn.com/vault/topic/article/Villanova_Wildcats/1900-01\ -01/2100-12-31/mdd/index.htm> Villanova's done this spring. They'll have their players sign up volunteers and they'll hold donor drives. One thousand suddenly looks easy. Especially since <http://sportsillustrated.cnn.com/vault/topic/article/Harvard_University/1900-01\ -01/2100-12-31/mdd/index.htm> Harvard's coach just called this week. " He said he heard about it and wanted to do something there too. We all do Toys for Tots and Light the Night and all those things, " Talley said. " But this is something that has a direct impact. " So direct that Talley may be without his star middle linebacker for a few weeks. Holland had 12 vials of blood drawn this week, which will be tested against 14 other compatible matches to see which blood is the most compatible. If it's Holland, he'll undergo the same process Marcoux did and wait six weeks for his marrow to be replaced. <http://sportsillustrated.cnn.com/vault/topic/article/Villanova_Wildcats/1900-01\ -01/2100-12-31/mdd/index.htm> Villanova's 1-1, they're only five years removed from a trip to the national semifinals, and Holland's really hoping, he said, " that I'm the match. " So is Talley. Even if it does mean a hole in the middle of his defense. " What are we going to say? 'Sorry, we have a football game to win?' " the 28-year coaching veteran asked, scoffing at the mere suggestion. " We're talking about saving a life. That's greater than any win we could have on our schedule. " And definitely worth missing any number of games for. Just ask Holland. Read more: <http://sportsillustrated.cnn.com/vault/article/web/COM1060271/3/index.htm#ixzz1\ 56DpLiRG> http://sportsillustrated.cnn.com/vault/article/web/COM1060271/3/index.htm#ixzz15\ 6DpLiRG From: [mailto: ] On Behalf Of Ted Fontenot Sent: November-12-10 9:53 AM Subject: Re: [ ] Re: donors refused- Perhaps we should keep in mind that everyone who agrees to be tested as a possible donor is assured that they can change their mind at anytime. They, at the beginning, only agree to be tested. They don't make a unqualified commitment to donate. It's not like those potential donors commit themselves irrevocably at the beginning and nothing can change that. That doesn't mean we don't have a right to our opinion on what people should do (especially people close to the afflicted). We certainly are entitled to judge them (on non-contractual grounds) for their ultimate refusal, it's just to say that we maybe don't know everything about the process and about the individual circs. (and character) of the potential donor. And we may want to watch being too harsh--that can turn people off from even considering it. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Hello Fellow Warriors, Over the last year my group of friends and I have partnered with Be The Match( National Bone Marrow Registry) conducting bone marrow drives( Our last one for this year will be December 11 and 12th. I can only speak for what we do at our drives . We have sheets describing the two ways that the marrow is harvested.Technology is improving all of the time. We register donors with four cotton swabs in their cheeks now- no blood. The traditional harvesting  is the way we get our BMBs from the hip under anesthesia and the other is actually very much like they do for platelets through the arm. We tell the applicants that they have to be willing to do either process because the procedure is decided by the patient's doctor. The entire process is described including the shots you take to increase the cells. We usually have literature with testimonies given by those who have donated. They sign a card saying that they would be willing to donate to anyone -not just someone specifically. We ask people to be sure that this is something they want to do because the delays in finding a new match might cost someone their life. We ask that they update their info online if they move, change names etc. Or, if they decide to change their mind at any time due to any circumstances, we ask that  that they remove themselves from the registry- no judgment about it. They are given a card with their registration number and web and phone numbers to contact the Registry. We also periodically conduct online drives where the registration is free- if we have an active online drive we suggest that the people who are not feeling sure, go home go to Be The Match's website read about risks ; the procedures etc and then if they would like to they can register online. Anyone can register online but with a special code there is a cost attached to it. We never pressure people because we only want people who are committed to moving forward. Last week my team and I participated in one of  Be The Match's first 5ks in Long Beach. During the event there was a little 3 year old boy with a shirt that said " recipient " and his 7 year old sister had a shirt that said " donor. "  His mother told me he was 1 when he was diagnosed. I also spent some time walking with two sisters whose father had died a month ago waiting for a match. My opinion is that I don't feel comfortable judging others- but I do  wish they had removed themselves from the list before they were called to donate. Also- it seems that the donor should be called first to confirm their willingness before notifying the recipient that there is a match and building hope. I've heard 47% of people either can't be found or refuse when contacted. We will be working to change that statistic for our drives. Most people come up and know they want to register.  If they seem to be struggling, I say that there are three things to consider when they thinking about registering. First, I can guarantee that  no matter  what discomfort or pain they will go through for the donation it is nothing compared to what the patient has had to endure. Second- ask yourself what are you willing to do to save someone's life. Last- a gift is not a gift if it comes with conditions. So if you are not comfortable today don't register. If anytime in the future you change your mind you can contact the Registry and find a drive to register for free or register online for a fee. I encourage people to donate money and/or time if they aren't comfortable registering. I registered for the Bone Marrow Registry in 1989 or 1990- of course I had to remove myself when I was diagnosed. The account rep we partner with has brought over 9,000 people to the registry this year. I want to believe that those 9,000 will either answer the call if it comes or remove themselves if they  no longer want to donate. Most of usin the CML group  will live long lives, thanks to our poison in a pill better living through chemistry drugs. But a transplant remains our only cure. Some of us may even need a transplant one day in order to survive. My hope is that when that day comes, they find a match that follows through on their promise. Chi  ________________________________ From: Ted Fontenot <mortycausa@...> Sent: Fri, November 12, 2010 6:53:28 AM Subject: Re: [ ] Re: donors refused-  Perhaps we should keep in mind that everyone who agrees to be tested as a possible donor is assured that they can change their mind at anytime.  They, at the beginning, only agree to be tested.  They don't make a unqualified commitment to donate.  It's not like those potential donors commit themselves irrevocably at the beginning and nothing can change that.  That doesn't mean we don't have a right to our opinion on what people should do (especially people close to the afflicted).  We certainly are entitled to  judge them (on non-contractual grounds) for their ultimate refusal, it's just to say that we maybe don't know everything about the process and about the individual circs. (and character) of the potential donor.  And we may want to watch being too harsh--that can turn people off from even considering it. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 THANK YOU Chi! I now feel like I have a much more thorough understanding of what being a donor entails! On Fri, Nov 12, 2010 at 3:13 PM, china neal <chimera46@...> wrote: > > > Hello Fellow Warriors, > Over the last year my group of friends and I have partnered with Be The > Match( > National Bone Marrow Registry) conducting bone marrow drives( Our last one > for > this year will be December 11 and 12th. I can only speak for what we do at > our > drives . We have sheets describing the two ways that the marrow is > harvested.Technology is improving all of the time. We register donors with > four > cotton swabs in their cheeks now- no blood. The traditional harvesting is > the > way we get our BMBs from the hip under anesthesia and the other is actually > very > much like they do for platelets through the arm. We tell the applicants > that > they have to be willing to do either process because the procedure is > decided by > the patient's doctor. The entire process is described including the shots > you > take to increase the cells. We usually have literature with testimonies > given > by those who have donated. They sign a card saying that they would be > willing to > donate to anyone -not just someone specifically. We ask people to be sure > that > this is something they want to do because the delays in finding a new match > > might cost someone their life. We ask that they update their info online > if > they move, change names etc. Or, if they decide to change their mind at > any > time due to any circumstances, we ask that that they remove themselves > from the > registry- no judgment about it. They are given a card with their > registration > number and web and phone numbers to contact the Registry. > > We also periodically conduct online drives where the registration is free- > if we > have an active online drive we suggest that the people who are not feeling > sure, > go home go to Be The Match's website read about risks ; the procedures etc > and > then if they would like to they can register online. Anyone can register > online > but with a special code there is a cost attached to it. We never pressure > people because we only want people who are committed to moving forward. > Last > week my team and I participated in one of Be The Match's first 5ks in Long > > Beach. During the event there was a little 3 year old boy with a shirt > that > said " recipient " and his 7 year old sister had a shirt that said " donor. " > His > mother told me he was 1 when he was diagnosed. I also spent some time > walking > with two sisters whose father had died a month ago waiting for a match. > > My opinion is that I don't feel comfortable judging others- but I do wish > they had removed themselves from the list before they were called to > donate. Also- it seems that the donor should be called first to confirm > their > willingness before notifying the recipient that there is a match and > building > hope. > > I've heard 47% of people either can't be found or refuse when contacted. > We > will be working to change that statistic for our drives. Most people come > up and > know they want to register. If they seem to be struggling, I say that > there are > three things to consider when they thinking about registering. First, I can > > guarantee that no matter what discomfort or pain they will go through > for the > donation it is nothing compared to what the patient has had to endure. > Second- > ask yourself what are you willing to do to save someone's life. Last- a > gift is > not a gift if it comes with conditions. So if you are not comfortable today > > don't register. If anytime in the future you change your mind you can > contact > the Registry and find a drive to register for free or register online for > a > fee. I encourage people to donate money and/or time if they aren't > comfortable > registering. > > I registered for the Bone Marrow Registry in 1989 or 1990- of course I had > to > remove myself when I was diagnosed. The account rep we partner with has > brought > over 9,000 people to the registry this year. I want to believe that those > 9,000 > will either answer the call if it comes or remove themselves if they no > longer > want to donate. Most of usin the CML group will live long lives, thanks to > our > poison in a pill better living through chemistry drugs. But a transplant > remains > our only cure. Some of us may even need a transplant one day in order to > survive. My hope is that when that day comes, they find a match that > follows > through on their promise. > > Chi > > > > ________________________________ > From: Ted Fontenot <mortycausa@... <mortycausa%40>> > <%40> > Sent: Fri, November 12, 2010 6:53:28 AM > > Subject: Re: [ ] Re: donors refused- > > > Perhaps we should keep in mind that everyone who agrees to be tested as a > possible donor is assured that they can change their mind at anytime. > They, at > the beginning, only agree to be tested. They don't make a unqualified > commitment to donate. It's not like those potential donors commit > themselves > irrevocably at the beginning and nothing can change that. That doesn't > mean we > don't have a right to our opinion on what people should do (especially > people > close to the afflicted). We certainly are entitled to judge them (on > non-contractual grounds) for their ultimate refusal, it's just to say that > we > maybe don't know everything about the process and about the individual > circs. > (and character) of the potential donor. And we may want to watch being too > > harsh--that can turn people off from even considering it. > > > > > > > > > > > > > > > > > > > > > > > > > Hi. > > > > > > I did hear the story. I believe one match was the > > > > > sister who didn't want to > > > > > > donate her bone marrow. I believe the news said that > > > > > the sister didn't want > > > > > > to feel any pain. I don't know how the sister can live > > > > > with her decision.It > > > > > > is really sad. Anyway, that is the one that I heard > > > > > about. I believe that > > > > > > the sister was a perfect match. I don't recall about 4 > > > > > other donors. The > > > > > > news channel focused on the sister. Is there another > > > > > case like that in New > > > > > > York? > > > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > > > the FOUR donors who > > > > > > > refused to donate bone marrow to a woman on Long > > > > > Island, New York who > > > > > > then died? > > > > > > > This poor woman had only four matches in the > > > > > whole registry then all > > > > > > > refused to go through the procedure. Her family > > > > > is devastated. I missed > > > > > > the > > > > > > > beginning of the story and I don't know what type > > > > > of leukemia she had. > > > > > > Did > > > > > > > anyone else hear it? What type did she have? > > > > > > > in NY > > > > > > > > > > > > > > [Non-text portions of this message have been > > > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 That is a super summary. Thanks.  Just one question: is that ironclard that someone can't just volunteer to donate to a specific person? Say, if I needed a BMT, and my brother was willing to go through the process but only for me--he'd be turned down?  > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 The registry is for people who do not have a relative as a match. Someone can volunteer to donate only to one person, but there is no reason to go through a registry at that point. Re: [ ] Re: donors refused- That is a super summary. Thanks. Just one question: is that ironclard that someone can't just volunteer to donate to a specific person? Say, if I needed a BMT, and my brother was willing to go through the process but only for me--he'd be turned down? > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 No if you needed a BMT they would test him first to match you- specifically because you are family. He wouldn't have to join the Registry. Family members are tested first.Then they search the Registry. A match can be found anywhere in the world. But if there are no matches on the registry your only chance is to widen the net with drives, hoping that your match registers.  When they do these big drives like they did in NY looking for a match for the child who was on Broadway in the Lion King- they should make it clear if they can't save her life they may be able to save someone elses. 10,000 people joined the registry on those drives. Was it because she was 11 ; a celebrity? Who knows? Logically the question is- why would you be willing to save one strangers life but not another? My feeling  is if you only want to donate to someone specifically- you should go to the transplant center pay the $52-100 fee( maybe they test and charge the patient's insurance/I don't know) see if you match and then donate to that person. But if you register at a drive ( where the fees are usually paid from donations or from a sponsorship) then you should be willing to donate to anyone. Again if your circumtsances change- remove yourself. But don't have someone sitting in quarantine waiting and praying for a match and be told that miracle of miracles a match has been found only to find out ....they changed their mind.  My co- workers husband ,Bobby, died of Leukemia- he was in City of Hope waiting for a match. He almost made it to his 30th birthday. He left behind two little children; we did our first drive here at work to honor Bobby. ________________________________ From: Ted Fontenot <mortycausa@...> Sent: Fri, November 12, 2010 3:47:38 PM Subject: Re: [ ] Re: donors refused-  That is a super summary. Thanks.  Just one question: is that ironclard that someone can't just volunteer to donate to a specific person? Say, if I needed a BMT, and my brother was willing to go through the process but only for me--he'd be turned down?  > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Dear Chi, Thank you for the explanation of what you tell a potential donor. On this subject, and others I tend to be a black and white person. I saw red when this woman (mother of 2) who needed a BMT and they found 4 matches for her and they all refused to go ahead with the donation. I didn’t have the luxury of understanding why they refused. My comments on the web site were pretty callous. In my mind their action was just short of murder. I now find out that they had registered for a bone marrow appeal by the young Broadway actress Tavarez (11 year old in the Lion King). It seems that they were only interested in saving her and no one else. Sadly there was no match found for and she died. Zavie From: [mailto: ] On Behalf Of china neal Sent: November-12-10 6:14 PM Subject: Re: [ ] Re: donors refused- Hello Fellow Warriors, Over the last year my group of friends and I have partnered with Be The Match( National Bone Marrow Registry) conducting bone marrow drives( Our last one for this year will be December 11 and 12th. I can only speak for what we do at our drives . We have sheets describing the two ways that the marrow is harvested.Technology is improving all of the time. We register donors with four cotton swabs in their cheeks now- no blood. The traditional harvesting is the way we get our BMBs from the hip under anesthesia and the other is actually very much like they do for platelets through the arm. We tell the applicants that they have to be willing to do either process because the procedure is decided by the patient's doctor. The entire process is described including the shots you take to increase the cells. We usually have literature with testimonies given by those who have donated. They sign a card saying that they would be willing to donate to anyone -not just someone specifically. We ask people to be sure that this is something they want to do because the delays in finding a new match might cost someone their life. We ask that they update their info online if they move, change names etc. Or, if they decide to change their mind at any time due to any circumstances, we ask that that they remove themselves from the registry- no judgment about it. They are given a card with their registration number and web and phone numbers to contact the Registry. We also periodically conduct online drives where the registration is free- if we have an active online drive we suggest that the people who are not feeling sure, go home go to Be The Match's website read about risks ; the procedures etc and then if they would like to they can register online. Anyone can register online but with a special code there is a cost attached to it. We never pressure people because we only want people who are committed to moving forward. Last week my team and I participated in one of Be The Match's first 5ks in Long Beach. During the event there was a little 3 year old boy with a shirt that said " recipient " and his 7 year old sister had a shirt that said " donor. " His mother told me he was 1 when he was diagnosed. I also spent some time walking with two sisters whose father had died a month ago waiting for a match. My opinion is that I don't feel comfortable judging others- but I do wish they had removed themselves from the list before they were called to donate. Also- it seems that the donor should be called first to confirm their willingness before notifying the recipient that there is a match and building hope. I've heard 47% of people either can't be found or refuse when contacted. We will be working to change that statistic for our drives. Most people come up and know they want to register. If they seem to be struggling, I say that there are three things to consider when they thinking about registering. First, I can guarantee that no matter what discomfort or pain they will go through for the donation it is nothing compared to what the patient has had to endure. Second- ask yourself what are you willing to do to save someone's life. Last- a gift is not a gift if it comes with conditions. So if you are not comfortable today don't register. If anytime in the future you change your mind you can contact the Registry and find a drive to register for free or register online for a fee. I encourage people to donate money and/or time if they aren't comfortable registering. I registered for the Bone Marrow Registry in 1989 or 1990- of course I had to remove myself when I was diagnosed. The account rep we partner with has brought over 9,000 people to the registry this year. I want to believe that those 9,000 will either answer the call if it comes or remove themselves if they no longer want to donate. Most of usin the CML group will live long lives, thanks to our poison in a pill better living through chemistry drugs. But a transplant remains our only cure. Some of us may even need a transplant one day in order to survive. My hope is that when that day comes, they find a match that follows through on their promise. Chi ________________________________ From: Ted Fontenot <mortycausa@... <mailto:mortycausa%40> > <mailto:%40> Sent: Fri, November 12, 2010 6:53:28 AM Subject: Re: [ ] Re: donors refused- Perhaps we should keep in mind that everyone who agrees to be tested as a possible donor is assured that they can change their mind at anytime. They, at the beginning, only agree to be tested. They don't make a unqualified commitment to donate. It's not like those potential donors commit themselves irrevocably at the beginning and nothing can change that. That doesn't mean we don't have a right to our opinion on what people should do (especially people close to the afflicted). We certainly are entitled to judge them (on non-contractual grounds) for their ultimate refusal, it's just to say that we maybe don't know everything about the process and about the individual circs. (and character) of the potential donor. And we may want to watch being too harsh--that can turn people off from even considering it. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Thanks. Â Your responses have done much to clarify. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Thanks. Â Yes, it's becoming clearer. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Thanks Chi, very informative. bobby a ( Bobby ) Doyle, dob 12/17/29 DX 5/1995 Interferon 9 weeks/Hydroxyurea 5 years 02/2000 to 06/2002 Gleevec trial, OHSU 06/2002 Gleevec/Trisenox Trial, OHSU 06/2003 Gleevec/Zarnestra Trial, OHSU 04/2004 Sprycel Trial, MDACC, CCR in 10 months 04/2008 XL228 Trial, U of Mich. 01/2009 PCR 5.69 04/2009 Ariad Trial AP24534 09/2009 PCR 0.01 11/2009 PCR 0.034 02/2010 PCRU #840 Zavie's Zero Club > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news said that > > > the sister didn't want > > > > to feel any pain. I don't know how the sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that I heard > > > about. I believe that > > > > the sister was a perfect match. I don't recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches in the > > > whole registry then all > > > > > refused to go through the procedure. Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Thank you Bobby! My prayers are with you too! God Bless, Jackie S. > > > > > > > > > > > > > > > Hi. > > > > I did hear the story. I believe one match > was the > > > sister who didn't want to > > > > donate her bone marrow. I believe the news > said that > > > the sister didn't want > > > > to feel any pain. I don't know how the > sister can live > > > with her decision.It > > > > is really sad. Anyway, that is the one that > I heard > > > about. I believe that > > > > the sister was a perfect match. I don't > recall about 4 > > > other donors. The > > > > news channel focused on the sister. Is there > another > > > case like that in New > > > > York? > > > > Sandi > > > > > > > > > > > > > > > > > > > > > > Did anyone else see the report on the > news about > > > the FOUR donors who > > > > > refused to donate bone marrow to a > woman on Long > > > Island, New York who > > > > then died? > > > > > This poor woman had only four matches > in the > > > whole registry then all > > > > > refused to go through the procedure. > Her family > > > is devastated. I missed > > > > the > > > > > beginning of the story and I don't know > what type > > > of leukemia she had. > > > > Did > > > > > anyone else hear it? What type did she > have? > > > > > in NY > > > > > > > > > > [Non-text portions of this message have > been > > > removed] > > > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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