4 get cancer from teen's donated organs

So when his parents were told that their 15-year-old son was dying of bacterial meningitis, the couple didn't hesitate in donating his organs to desperately ill transplant recipients.

"I immediately said, `Let's do it'," Jim Koehne recalled. "We both thought it was a great idea. This is who Alex was."

A year later, their dream that Alex's spirit might somehow live on has become a nightmare.

It turned out that Alex did not die of bacterial meningitis, but rather a rare form of lymphoma that wasn't found until his autopsy, and apparently spread to the organ recipients. The Long Island couple was told that two of the recipients have died, and two others had the donor kidneys removed and are getting cancer treatment.

The revelation has led two hospitals to revise transplant procedures, although the state Health Department found that no one was to blame. Experts say the possibility of getting cancer from an organ donor is extremely rare: Only 64 cases have been identified in a national study of 230,000 cases, according to the United Network for Organ Sharing.

"A 15-year-old boy's organs are a gift from the Almighty," said transplant surgeon Lewis Teperman, noting the majority of organ donors are much older than Alex. "Usually the organs from a 15-year-old are perfect. In this case, they weren't."

Teperman is the director of transplantation at New York University Medical Center, where two of the transplants were done and lead author of a report on the case.

Last March, Alex was taken to Stony Brook University Hospital on Long Island after treatment at another hospital for nausea, vomiting, severe back and neck pain, seizures and double vision. Doctors told his parents they suspected he had bacterial meningitis — an infection of the fluid surrounding the spinal cord and brain — although tests didn't reveal what bacteria caused it.

The Koehnes requested an autopsy. They were told a month later that Alex had actually died from a rare form of non-Hodgkin's lymphoma, a blood cancer which affects fewer than 1,500 patients in the U.S. annually.

Jim and Lisa Koehne (pronounced KAY-na) later learned that a 52-year-old man died of the same rare lymphoma about four months after receiving Alex's liver. The couple said they were also told a 36-year-old woman who received Alex's pancreas also developed lymphoma and died.

Two patients who received the kidneys are undergoing cancer treatment and are faring well, according to the report in the January issue of the American Journal of Transplantation.

All four recipients were notified immediately of the autopsy results and got chemotherapy, the report said. None have been publicly identified.

The transplants were done at Stony Brook, NYU Medical Center and the University of Minnesota, according to Newsday, which first reported on the case.

The report's authors noted a diagnosis of bacterial meningitis does not preclude donating organs because the recipients can be given antibiotics to prevent infection, but they concluded "a more thorough evaluation of the donor" should be done when there is any doubt.

"Tumors, especially lymphoma, can masquerade as other causes of death, and may be missed in potential donors," they wrote.

Teperman, who was not involved in the case, said the review did not fault anyone who made the incorrect diagnosis.

"No one was able to say they could have figured out that this diagnosis was lymphoma," he said. "We are recommending that if the reported case is bacterial meningitis, maybe wait and get more cultures, possibly don't take the organs."

But, he added, this case is so rare that it would have been difficult for anyone to predict what might have happened, and that physicians acted in good faith in trying to harvest organs for desperately ill recipients.

NYU and Minnesota now follow the recommendation for additional tests for bacterial meningitis.

Stony Brook officials said they followed organ donor network guidelines, but cited federal privacy laws in declining to specifically discuss the Koehne case.

A review by the state Health Department "did not find flaws in policies, procedures and actions at Stony Brook" involving Alex's case, said agency spokeswoman Claudia Hutton.

The New York Organ Donor Network, which coordinated the transplants, issued a statement of sympathy for the family. The network pointed out that 22,000 patients received life-saving organ transplants in the U.S. in 2007, and another 6,411 patients died while awaiting organ donations.

The Koehnes have not sued, although their attorney, Edward Burke, said they are considering all legal options.

At 5-foot-11, Alex was already as tall as his father. He was in the church youth ministry and was a lineman for the East Hampton High Bonackers junior varsity team.

"He loved football," his dad recalled. "He would watch ESPN every morning and then come downstairs and tell me all about it."

The Koehnes have started a foundation to fund cancer research, which is receiving strong community support.

Despite the outcome, he and his wife believe organ donors save lives, and have no regrets about their decision.

"We would absolutely, positively do it again," Jim Koehne said. "I haven't done it yet, but I am definitely going to sign up myself."

So sad.

If you have never heard the story of the "Nicholas Effect" this will bring tears to your eyes.

http://www.transweb.org/nicholas/nicholas_scout.html

A Cub Scout's FINAL GIFT By Reg Green Nicholas Green couldn't wait until he became a Cub Scout; then his life was tragically cut short in a moment of sudden violence.

(Editor's note: 7-year-old Nicholas Green of Bodega Bay, Calif., was a Cub Scout in Pack 78 in the Redwood Expire Council when he was shot and killed by car bandits during a family trip to southern Italy in Septernber 1994. His father has written the following tribute.)

I NEVER THOUGHT HE WOULD make a good Scout. Like his father he seemed destined to be baffled by knots, tent pegs, and getting damp twigs to light. I daresay his entry for the pinewood derby was the ugliest in the United States, possibly in the history of the event. And he was always losing the slide for his neckerchief.

I have a memory of him on a lake last summer. He'd so looked forward to taking a canoe trip that we gave him his life jacket and paddle and launched him. You're on your own, we told him.

He didn't know it but we watched him every second, ready with the other canoe to pick him up if anything went wrong. He just sat there, making ineffectual strokes with the paddle, carried along with the wind farther and farther away. In the end he just drifted, his mind consumed with some daring adventure, a hero alone in a canoe against the wilder ness. He'll never learn the J-stroke, I thought, as we went out to tow him back. And, of course, he never did.

But he had inside him the pure spirit of Scouting. He hated to see others unhappy and wanted to help anybody in trouble.Even when doing jobs he didn't like, he tried his best. Neither his mother nor I ever knew him to tell a lie. He was loyal to his friends, his family, and his toys. He had joined the Cub Scouts only a few months before and loved those Tuesday evening meetings. He'd wear his uniform all day and ask several times after he came home from school: "How long is it now?"

At 7 years old he wasn't ashamed to hold hands and, after gulping down dinner, we'd walk hand in hand to Mr. Holleran's where all six members of Den 3 were gathering. An hour or so later I'd pick him up, the house exploding with blue- and yellow uniforms. No, he hadn't put anyone out in softball and, yes, he'd lost every arm wrestling contest. But it didn't seem to worry him: He'd had a good time with people he liked. I knew at the time that these walks home were moments to treasure. Now they are touched with gold.

He liked games where people cooperated. So when he played with his toy soldiers, the Indians were invited to join the cavalry and they all had a party. As a Canadian Mountie he didn't always get his man, but he always helped him. As St. George he wanted to kill the dragon, but not hurt him.

He had a way of bringing sunshine into a gloomy day. Once, when he was 5, I was preparing to board a plane for the flight home from a visit to Texas. At security clearance the belt suddenly stopped, red lights flashed, and I looked round to see which poor boob had caused the problem. Then I saw in the X-ray image of my carry-on luggage the outline of the $1.79 toy gun I'd bought for him at K-Mart. The police bustled in, checked the gunÑstill in its original packageÑand said I'd be reported to the Federal Aviation Authority for attempting to take a: 'simulated weapon" on an aircraft and could be fined up to $10,000. I came home depressed. No cap pistol was worth $10,001.79. But when Nicholas saw it, he wiped away every care. "It's the best present I've had in years," he said.

He loved tales of valor and honor. I read Tennyson's "The Charge of the Light Brigade" to him and then videotaped the motion picture. Time and again we thrilled as a dying trooper held the flag up until another soldier r ode alongside to take it. He was especially taken by flags flown at half-staff to commemorate the death of heroes. On the day of his funeral I asked our local clubhouse to fly theirs for him. In a stiff breeze it crackled bravely, and I imagined him smiling at this last tribute to his manly little heart.

All that vitality survives today in a very special way. The news media has carried around the globe the story of his tragic death and how the donation of his organs gave seven people in Italy the chance to lead a full life. The girl who received his liver was two days away from death from a disease that had killed her brother. The boy who got the heart was 15 but weighed only 60 pounds and seemed likely to waste away. The doctor told the boy who received a kidney to think of something nice when he was going into the operation. "I'm thinking of Nicholas," he replied.

In Italy Nicholas became a national hero. He has had streets, parks, and schools named for him. Scholarships to help needy or talented children are being set up all across the country. His body was flown home in the Italian president's military plane, and in Rome his memory was honored with a gold medal, the same award which had previously been received by an Italian whose bravery saved the lives of several thousand Jews in World War II.

A second award in his name was the equivalent to the one that two years ago went to the scientist who discovered the AIDS virus, and a third was one that in a previous year had been presented to Mother Teresa. That isn't bad company for a first-year Cub Scout, is it?

Since his death the number of Italians who say they will donate their organs has more than tripled. The change is so dramatic that it is being called "the Nicholas effect," and could result in the saving of hundreds, even thousands, of lives. But a lack of organ donors is not a situation unique to Italy. In the United States seven or eight persons die ether every day because of the failure of one organ. What a waste that seems. While the letters we have received from all across the country suggest attitudes are changing, there is still a long way to go.

We can all help by signing the donor's card and, just as important, discussing this subject with our families. Talking about what could happen and how you'd deal with it needn't be upsetting, and it prepares your mind if you are ever called on to make that wrenching decision. For us, the idea that our son's body is helping others is soothing, not disturbing.

His tragic death has also helped to light a spark in the hearts of millions of youngsters and their parents around the world. It reminds us all that life is a very precious thing, and I imagine parents everywhere giving their children an extra hug as they go to beck or working with them a little longer on a joint project. If we could ask Nicholas what is the very best thing that could come out of this affair, I bet that would be it.

Disclaimer: Opinions posted on Free Republic are those of the individual posters and do not necessarily represent the opinion of Free Republic or its management. All materials posted herein are protected by copyright law and the exemption for fair use of copyrighted works.