L.I. Woman Dies After Marrow Donors Refuse To Show

Family Upset After DNA Matches Decline Chance To Save Life

November 8, 2010 5:51 PM

Hospital Bed (credit: CBS 2)

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SMITHTOWN, N.Y. (CBS 2/ WCBS 880) — There is heartbreak for a Long Island father. His wife died after four bone marrow “matches” declined to donate.

As CBS 2’s Tony Aiello reports, the man now wonders if they were more interested in helping a young girl than helping his wife.

It’s a hopeful scene whenever people turn out for a DNA swabbing to see if they qualify to donate bone marrow.

But as Brian Lindenberg learned, hope can be crushed when DNA matches decline to donate.

“Now I have two girls at home without a mother, and lots of lives are ruined,” Lindenberg said.

Listen: WCBS 880′s Mike Xirinachs reports.

Lindenberg said it’s hard not to be bitter after his wife Penny’s battle with leukemia ended three weeks ago. The bone marrow donor program matched her with four possible donors. Some of them were identified through drives held to support Shannon Tavarez, a young Broadway actress.

But all four of Lindenberg’s matches said “no” to actual donation, and she died without receiving a bone marrow transplant.

“That was a big concern, that if someone wasn’t going to be able to help the little girl, they might not want to get involved,” Lindenberg said.

Lindenberg said he also fears matches were turned off by bone marrow donation’s reputation for being painful. It used to, but new techniques make it much less so.

Nationwide, 47 percent who are matched as bone marrow donors eventually decide not to donate. A few cite medical concerns, but 15 percent said they’re simply “not interested” in donating any longer.

The national registry said it’s working to better educate potential matches.

“We emphasize and stress the commitment that when they join the registry they are joining for any patient that might need a match,” the registry’s Mary Halet said.

“I want them to know, they’re signing up to help anyone, someone in need,” Lindenberg said.

Lindenberg said he’s going public to spread that message and honor Penny’s memory.

More than 10,000 people were screened in bone marrow drives for Tavarez, but no match for her turned up. She died last week and was buried Monday.

L.I. Woman Dies After Marrow Donors Refuse To Show

Joan

My brother lost a donor 3 days before his transplant in January 2008. He will hopefully get one before the end of the year, should everything work out with the donor this time. YOU ARE SAVING A LIFE!!!! A few days of pain and inconvenience are wirht it!! God forbid you are in the same situation as my brother or this poor woman!!
mmmm

Stop the rce issue
mmmm

4 of4. Seems like the doctors did not contact any of them
POET

((((((((READ THIS))))))))))……..4 OUT OF FOUR IS UNBELIEVABLE N VERY DOUBTFUL…….LOOK INTO THIS!!!!!!!!!!! 4 OUT OF 4 THATS A LIE

All for Penny!

We wish it was a lie but unfortunately it is not. One of the donors actually kept rescheduling month after month saying that they had “scheduling problems.” The past 15 months have been devastating! We, Pennys family/friends, are now on a mission to bring this to light and to educate current and future donors.
Sickened

@ POET ((((((((READ THIS))))))))))…….. How can you post this and say this is a lie! SHAME ON YOU….I am a friend of this family. I would listen to Penny as she kept the faith in her situation and make excuses for these cowards ” maybe they just could not afford to take time off of work ” in her soft spoken voice she said to me!. Do you not think SHERLOCK that these news broadcast stations and newpapers would look into these stories and not do the homework before reporting this tothousands! GO BACK UNDER THE BRIDGE YOU CAME FROM

Lucretia

My heart also goes out to the white mother of two little girls who actually matched four of the donors who tested for the Lion King girl but all four refused to donate to this white mother of two who subsequently died. I wonder what this 11 year old black girl had that was so special that 50 Cent, Rhianna, and Alicia Keys came out and asked people to donate but four of these people refused to donate to a white mother of two. These four people couldn’t save the life of the 11 year old black girl but they did have a chance to make two white girls and their mother very happy and very lucky by literally saving the mother’s life. I would like to know why they were willing to donate to one but not the other? My heart goes out to the woman and her children and her husband and I hope the four donors who refused find a way to live with themselves after they were so eager to donate to the little black girl. She is no more and no less deserving than the white mother of two. I hope both the girl and the mother rest in peace as I’m sure they will both be sorely missed by their families.

mmmm

This has nothing to do with race. Stop it you idiot.

Elle

Are you so sure!

Joan

Chances are, the matches were all white persons as well. Most matches are genetically based and come from people of the same heritage.

Lucretia

Most but not all. It’s like blood, as long as you’re the same blood type, it doesn’t matter the color of the person donating the blood. As long as the genetically based matches designate a match, it doesn’t matter the color of the donor, albeit more often the same color as the patient. Then that begs the question, why would four white people even test themselves if they wouldn’t have been a genetic match for a black girl anyway?

Mariel

Con’d: To those who said it was painful. Did you know that the process is now performed through stem cells? It’s like giving blood through the arms. Before you say NO, get your facts straight. Bone marrow donation can now be done under sedation. Either way, saving a life is worth it. To say, these 4 individuals may have had their reasons does NOT work in life or death situations. When you sign up, the facts are presented
Mariel

This is so shameful and heartbreaking. I hope those four individuals realize that signing up to become a bone marrow donor is a commitment and NOT a game. You can cancel a date but NOT something so life and death. Donating marrow or stem cells today is not as difficult as it used to be. I happen to be a stem cell transplant survivor and luckily for me, I had a matching sibling, but many are not so lucky. If you sign up to become a donor, COMMIT to your obligation. My heartfelt condolences to the families. This death could have been prevented if those four individuals stepped up. Shame on you.
Mariel

This is so shameful and heartbreaking. I hope those four individuals realize that signing up to become a bone marrow donor is a commitment and NOT a game. You can cancel a date but NOT something so life and death. Donating marrow or stem cells today is not as difficult as it used to be. I happen to be a stem cell transplant survivor and luckily for me, I had a matching sibling, but many are not so lucky. If you sign up to become a donor, COMMIT to your obligation. My heartfelt condolences to the families. This death could have been prevented.
Katrine Meyer

Put yourself in this family’s shoes.. if you or a loved one had cancer and bone marrow transplant had the best chance of saving their/your life, how would you feel if there were matches for you that decided not to follow through. Some people are lucky to get even one match and some after years of waiting. I am going to put myself on the bone marrow registry, and if I am a match to someone then I will jump at the opportunity and be there as soon as the green light is given. I am going to do this in Penny’s honor. Penny was a very special person, who loved to help others. Her life was cut tragically short. Penny, You are sorely missed!
JR-BK

People have their reaons and we shouldn’t judge.

Sal

Here’s the reason, JR-BK:
They signed up because they wanted the publicity if they matched to help that little girl on Broadway – hoping to cash in.
But when it was just a regular person, they couldn’t be bothered.
I hope those idiots are tormented for the rest of their lives.
Joan

then they should never have signed up in the first place.
DIANE H.

THEN WHY WOULD YOU SIGN UP TO BE A DONOR…KNOWING (!) THAT YOU COULD POSSIBLY BE A MATCH FOR SOMEONE!!!!!!!!

jagdish

I was doing research online and found out it is really painful and I would not be able to go back to work for up to a month. I got scared. Sorry.

sharon

ARE YOU KIDDING ME! YOU COULD HAVE SAVED HER (OR SOMEONE ELSES) LIFE! First – the donation she needed would not have been painful at all and you probably would have been back to work the next day. Second – how much pain do you think she was in which could have been avoided (maybe you should go to the hosp and spend some time meeting some of the patients). Third – How much pain do you think her 10 and 11 year old daughters and husband are in now? COWARD – Why did you even put yourself on the registry???

sad day

I feel sorry for this families loss. Cancer is a cruel horrible thing.

As far as the registry, many Govterment agencies “strongly” encourage its new members to sign up for these lists.
These new members are kind of peer pressured into doing so. They usually assume they will never be called
and that if they don’t sign up they will be looked down on by members of the agency and may hurt their chance of advancement. This is not fair to anyone. Lest of which the families who hear there is a match and the person(s) don’t show up.
Here is kind of what I mean.
A clip from this memo.
http://www.nyc.gov/html/fdny/html/pr/2010/012510_0910.shtml

“…
FDNY encourages its members to donate blood and other blood products, such as platelets, bone marrow and stem cells. Its bone-marrow-donation partnership with NYBC began in 1990. Over the past twenty years, the FDNY has become the single largest group on NYBC’s bone marrow registry with more than 8,000 FDNY members on the donor list. Probationary firefighters are encouraged to sign up for the bone marrow registry during their training at the Fire Academy on Randalls Island. In the past six years, nearly every probationary firefighter has participated in the program.
…”
It’s that last line that should make you think. I take nothing away from the FDNY, they run in where we run out, but the average percentage of the population who sign up for this list is small in comparison to the overall population. Having a nearly 100% signup for each year for 6 years is beyond the norm.
My condolences again to the families affected by this hideous disease.

Sgeo

Should have done your “research” BEFORE signing up.

I, for one, am willing to endure (non-permanent non-fatal) pain to help save another human being’s life.
Joan

Just curious, where did you do your research? Did you speak to anyone from the Marrow Program?

Devenio

There is something fishy about this story. 4 people decided not to show up? The only 4 people in the world who was a match ALL decided not to show up? Were they even contacted?
JeffG

I don’t understand? Were these four people contacted by mail? phone? directly? I mean who would not come forward if they knew how absolutely imperative it was to do so? One or two yes, but four? How can this be?

And no, I don’t live in a fantasy world where it is all sunshine and light but something doesn’t seem right about this story.
Nicole

SHAME ON THE 4 PEOPLE!!! Dont stay on the list or get tested to be on the list if you dont want to donate and save someone’s life. Karma will come back and get you. I am on the list and did donate 5 years ago and it was the best decision of my life. The 4 people should be contacted and told that the recipient has passed. I hope the guilt ways on them.
Mike

One word…..Karma.
none of your damn business

There is this thing called Karma. It’s going to bite them in the ass one day.
MissJusticeNY

I personally feel that a lot of people who register to be donors wouldn’t go through with it if given the chance. A lot of people think a bone marrow transplant is like a blood transfusion- it is actually a quite long and painful process. People- if you aren’t serious about donating, don’t register. These are peoples lives you’re playing with!

Joan

Who is tellling you it’s a long and painful process? 75% of the donations are done through pheresis, the other 25% done through bone marrow, under anestesia. With that you are sore for a few days. A little Tylenol goes a long way.
Mandi

I donated and it is not a long and painful process at all. It was a 5 day ordeal that was very similar to a blood transfusion with some discomfort. I donated stem cells, but know people who have donated actual marrow through the surgical procedure, who only had a few days of discomfort.

Gordon

Disgraceful – I await the opportunity to save a life. Why put yourself in the database if you have no intentions of stepping forward to help another human being. Very sad – my heart goes out to all affected by this pathetic behavior – I hope they REMOVE those people who decided not to show up from the database IMMEDIATELY so no other lives are lost.

WHAT GOES AROUND COMES AROUND, SOMETIMES WORSE!!
Allison

i just really hope that those same four people will be contacted and informed that their decision to not take action resulted in the death of an innocent woman. Maybe then this sad story will impact the people it really needs to impact.
Donald Bezzina

Surely, they must have all had their reasons for not taking the leap of faith. They must now with those reasons. As for me, any further comment on the matter would be superfluous. Godspeed Penny.

Donald Bezzina

…..live with those reasons..

nick

Wow, those four should be scared for whats about to happen to them what goes around comes back around.
Donald Bezzina

Sadly, those failed donors have passed up a great chance to become true life savers. The immense pride and joy that you feel inside leaves a glow of accomplishment inside you that never leaves you until you die. I am a registered cornea donor myself.
Sean Hollywood

Those 4 people should not have waited until the last minute to come forward.
Eddie

I’m in the Bone Marrow registry and I await with great eagerness the opportunity to help someone in need. These people are cowards as far as I’m concerned, and now a woman is dead because of it. Shameful…
jojo

Why would you go and be tested to see if you are bone marrow match for any potential cancer patient? then not follow through if you are a match. Shame on those 4 people. Hopefully they can live with themselves and sleep well at night. I find it hard to believe that all 4 matches were contacted and not one would step up. Really sad. Everyone should think twice before they decide to go to these drives. Its very serious and you need to be willing and able to step up and do the right thing.

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L.I. Woman Dies After Marrow Donors Refuse To Show

Family Upset After DNA Matches Decline Chance To Save Life

November 8, 2010 5:51 PM

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