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The long wait for a match: Whitnall student searches world for a person to save his life

Nov. 26, 2008

Whitnall High School junior David Sczesny went with his dad, Gene, to donate blood last June. In the end, it is his life the drive might have saved.

Routine screening at the donation center revealed David was anemic; his iron count was too low for him to donate blood. David confided to his parents that had been suffering from headaches and dizziness in the weeks prior.

David’s mother, Mary Ochowicz-Sczesny, soon took her son to the doctor for follow-up tests. Those results revealed he was suffering from myelodysplastic syndrome — more commonly called MDS or bone marrow cancer. Once known as pre-leukemia, MDS usually strikes people older than 60.

The diagnosis, of course, devastated the Franklin family.

“It’s so bizarre. Who would think your kid would have cancer when they go to donate blood and they tell you you’re anemic. A lot of people are anemic,” Ochowicz-Sczesny said.

David is awaiting a bone marrow transplant, his only realistic treatment option. A successful transplant would give the teen marrow cells capable of producing healthy blood cells.

“Initially, they will do two worldwide searches immediately to see what they can get back. There are 11 million people worldwide on the registry. Seven million of them are on the U.S. national registry,” Ochowicz-Sczesny said. “When you think about it, that’s a drop in the bucket compared to the people in the world.”

The search for a marrow donor for David is complicated by a rare gene he inherited from his mother.

“They look at 10 proteins of your DNA, and they need to match as many because of rejection possibility,” Ochowicz-Sczesny said. “They like to have a 10-out-of-10 match. In any kind of organ transplant you need it to be a perfect match for it to be hopefully successful.”

If a transplant can be arranged for her son, it likely would take place at the Bone Marrow Transplant Clinic at Children’s Hospital of Wisconsin.

“It’s a very desperate and serious situation actually,” Ochowicz-Sczesny said. “He doesn’t have any other options for treatment.”

Further complications

Doctors had hoped to use Ochowicz-Sczesny’s marrow because, while not a perfect match, having carried him in her womb gives them a lot in common.

“A mother already has tissue and blood compatibility,” she said.

In prepping to spend the next several months at David’s bedside, she took care of errands and appointments on her to-do list, including getting a mammogram. It was only a few days before she learned she had breast cancer and will need to undergo surgery in the next few weeks.

She can no longer donate to her son because the drugs injected in donors to bolster their marrow could cause the cancer to spread rapidly.

Her diagnosis could be considered a setback, but Ochowicz-Sczesny refuses to look at it that way.

“I have absolutely no fear or anxiety about what’s happening to me,” she said. “I have to stay strong for my son.”

Crossing borders

Doctors have started searching for other matches and have found two people from outside the United States who are good, but not perfect, matches. Now, doctors must find out if the candidates are healthy and willing to go through the process. David should know sometime this week when he will undergo a marrow transplant, his mother said.

The donor would go to a local blood center where two pints of marrow will be drawn from their arm or hip, Ochowicz-Sczesny said.

The marrow would be sent to Children’s Hospital, where it would be given to David intravenously, just like a blood transfusion. Before that, though, he would receive a massive dose of chemotherapy to kill off his own bone marrow and blood cells.

“I’ll practically be dead,” the 16-year-old said. “Then they’ll give me the (donated) marrow, and hopefully my body will (accept it.) After a couple weeks of monitoring me, hopefully I’ll be able to walk out of the hospital.”

Still, there is a risk for rejection — no matter how high the match between donor and recipient.

Staying hopeful

David said the diagnosis at first “pretty much” struck him as being a death sentence. Since then, though, he has become more optimistic about his chance of survival. Skateboarding helps him unwind from the stress.

“I’m not too worried about it, because I realize that they’ve caught it early,” David said. “They can treat it and, hopefully, get rid of it.”

David said he is grateful for the efforts of his parents, friends and classmates.

“There’s a lot to look forward to. I’ve got tons of support,” he said.

David’s family continues urging people to join the bone marrow registry. About 550 people registered for it at the Pettit Center during a recent blood drive held in David’s name.

“I wasn’t expecting my donor to walk into the center that day. It was more about getting the word out about people who really need it,” David said.

John Neville can be reached at (262) 446-6609. Stefanie Scott can be reached at (262) 446-6618.

By the numbers

6,000

people search the National Bone Marrow Registry each day

18, 60

youngest and oldest ages at which a person can be a bone marrow donor

$52

cost of having tissue typing kit mailed to your home, allowing you to join the registry without attending a registration drive; visit marrow.org

(800) 627-7692

telephone number for information about the National Bone Marrow Registry

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