Ridge woman dies after bone marrow donors don't donate

THE Japanese maple on the front lawn of Penny Lindenberg's home was famous in her Ridge neighborhood.

"You always knew it was a new season when you saw the decorations," said her neighbor, Holly Swiderski. Halloween, St. Patrick's Day, Fourth of July, the first day of school - any occasion was an excuse for her to hang her usually handcrafted decorations on the little tree, family and friends said

Now it is decorated with white lights and orange leukemia awareness ribbons. On Oct. 17, the 37-year-old mother of two lost a 15-month battle with acute myeloid leukemia, the same disease that ended the life of "The Lion King" actress Shannon Tavarez, 11, last Monday.

Tavarez's and Lindenberg's destinies were intertwined in a small but significant way: A drive to register potential bone marrow donors was held on their behalf in July in Port Jefferson. No donor match was found for Tavarez, but her fame helped inspired 10,000 people to sign up with DKMS, a Manhattan-based bone marrow center.

Four matches were found for Lindenberg, her husband, Brian Lindenberg said, and hope blossomed in the family that a donor might be able to save her life. There were, of course, no guarantees that, even with a match, Lindenberg could be helped, but there was hope.

But none of the potential donors ultimately gave their bone marrow, a fact that upsets friends and family. The four did not materialize, and without any explanation.

Potential donors are kept anonymous and neither doctors nor patients know who they are or why they end up not donating.

Seeking to communicate need

"We're trying to get the message out about how important it is to go through with it if you are chosen for a match," said Brian Lindenberg, 38, who works for a car dealership in Smithtown. His wife always kept a bag packed, ready to go in case a match became available, he said. Each time one fell through, it plunged the family into despair.

Molly McCormick, senior manager of donor resources at the National Marrow Donor Program, the nonprofit national registry, said 47 percent of those who end up being a match do not donate. About 5.5 percent can't donate for medical reasons; 9.5 percent can't be located; 17 percent are "temporarily unavailable," and 15 percent are "not interested," McCormick said.

At DKMS, the world's largest bone marrow center with nearly 2.5 million potential donors and part of the National Marrow Donor Program, the rate of those who are matches who don't donate is 25 percent, said Katharina Harf, executive vice president of the registry. Harf attributes that to tighter screening and educating potential donors beforehand.

"If someone is not sure, we tell them they have to know they are signing up for any patient in need of a transplant until their [the donor's] 60th birthday," she said. When the family finds out there is a potential donor, "all their hopes go up. You hear a donor is not coming through, it's so devastating," she said.

It was just that way for Penny Lindenberg's family.

"We all felt so helpless through all of this," said her mother, Sue Wiswall of Lindenhurst, whose husband, Thomas, 64, died in July of a heart attack.

When Tavarez died, the lights on Broadway were dimmed. When Lindenberg died, there were not enough Mass cards for everyone who came to Boyd Funeral Home in Babylon, which was so packed it took mourners 45 minutes to reach the family.

Hoped to open day care center

The mother of two daughters, Abby, 11, and Ruthie, 10, Penny Lindenberg was remembered as someone who adored children, ran a Girl Scout troop and was the center of the neighborhood's kids' activities. In September 2008, before she was diagnosed, she quit her full-time job at Toys R Us to work part time to take care of her sister's son, Colin, 2 1/2, and a neighbor's child. Her dream was to open a day care center.

"She was like the neighborhood mom," Brian Lindenberg said.

She was also passionate about arts and crafts, painting dozens of vases and picture frames for the nurses, aides and others who took care of her at Stony Brook University Medical Center. In August, so ill she could barely hold the paintbrush, she decorated 23 vases for a cousin's wedding, Brian Lindenberg said.

Throughout her ordeal, she never complained, her sister, Sharon Smith of Mastic Beach, said.

"She was so courageous with the whole thing," Smith said. "She always was about doing everything for everybody else."

Smith, who just had her second child, was getting ready to be a "haplo" transplant donor, in which the donor is only half matched to the recipient. But the family was hoping better-matched potential donors would come through. In the meantime, her sister's leukemia came roaring back and she was unable to fight off an infection that took her life.

Family and friends are still trying to grasp that she is gone.

"We're just numb," Smith said.