By Laura Lane
Up until recently, the little girl who wants to be an English teacher someday, just like her mother, led an ordinary life. Attending Holy Family Catholic School in Hicksville, she is a familiar face at the Disney Store, where her mother recently bought her a Sleeping Beauty costume for Halloween. Although she has trick-or-treating on her mind these days, Kirsten looks forward even more to her first jazz recital in June. Already a veteran performer, with four tap and ballet recitals under her belt at the East Meadow Academy, she said jazz is now her favorite.
Yet, unbeknown to her, it's very unlikely she'll be at the recital. Last July, Kirsten was diagnosed with chronic myelogenous leukemia. Now the little girl who longs to dance and ride her bicycle desperately needs a bone-marrow transplant.
The nightmare began for the Stauder family last summer. They had just returned from a family vacation in Hawaii. Scheduled to have her yearly checkup by her pediatrician the day after they returned, Kirsten underwent a routine blood test. On the outside, she appeared to be in perfect health, but there was a problem.
The pediatrician said her platelets were up and told us to go to Schneider Children's Hospital," said Kirsten's father, Tim. "After a month, the hospital told us she had leukemia. It was very emotional for my wife and I when we went in to see the doctors. There were so many of them waiting for us. We don't have any family history of leukemia.
For now, Kirsten is symptom-free and taking medication to bring her white blood cell count down. But the Stauders were told that in order for her to be cured, Kirsten would need a bone-marrow transplant. To make matters worse, doctors said the family had only six months to find a donor. What's more, as Tim and his wife, Linda, struggled to grasp the meaning of what they were being told, the hospital informed them that they would also need to pay $8,000 up front in order to search the hospital registry to find a potential match for Kirsten.
Then the couple was advised that their health insurance would probably not cover the harvesting of the bone marrow from a candidate, if they found one. The harvesting alone would cost about $40,000, the Stauders were told.
We had our son Timmy tested because there was a 25 percent chance he could provide the bone-marrow transplant," Tim said. "When he wasn't the right type, we had all of our family tested. We've tried not to change our lives and did not want to go public, but once we found out we didn't have a relative to donate, we had to.
Each bone-marrow test costs $60. The Stauders realized they had to approach a non-profit registry. Later it became apparent that they would need to make use of more than one registry, since each has a limit on the number of people who can be tested.
Spending countless hours doing research on the Internet, the Stauders soon became experts ion their daughter's disease. They studied their options, and focused on spreading the word, desperate for help. Preparing for the long haul, Linda, a middle-school teacher in South Huntington, spent hours speaking to her health-care provider in an effort to secure some financial support. It's an effort she continues today.
The future is not something Tim and Linda can focus on at present. Finding a bone-marrow donor for Kirsten remains their top priority.
As frightening as the ordeal has been, the Stauders are hopeful and very spiritual. I tell my wife we were chosen for this, and I don't know why, Tim said. Maybe to get the word out about this, I'm not sure. I know that once Kirsten gets the transplant, she's going to be fine.
The Stauders' first bone-marrow blood testing drive was done with the help of the Ahepa Bone Marrow Registry and the Caitlin Raymond International Registry. Prior to the drive, Holy Family and St. Raphael's Catholic churches lent their support by distributing fliers, as did Kellenberg High School, where Kirsten's older brother Timmy is a student. The East Meadow PTA, East Meadow Fire Department and East Meadow Baseball Softball Association also distributed fliers.
It was evident the support paid off when 702 people packed St. Paul Greek Orthodox Cathedral in Hempstead to be tested. But the Stauders were told they had to wait 21 to 30 days to find out if there is a match. They are still waiting.
Only one out of every 20,000 people could be a match, so we couldn't wait, Tim explained. That is why we organized the next drive.
There was a heavy turnout at the Oct. 19 drive, held at the East Meadow Fire Department Headquarters with the help of the American Bone Marrow Registry. Firefighters from throughout the department, alerted of the drive on the radio that morning, stopped by to be tested.
The Stauders are neighbors of Commissioner Robert Beck, said John Bohl, an East Meadow fireman. When we found out, we offered to help. The firehouse is central to the community and has the needed space. Kirsten is a poster child for cute and her parents are fantastic people.
Even if a donor is found, Kirsten's road to normal health will be a difficult one. She will have to receive radiation and chemotherapy seven days prior to the harvesting of the donor, which will weaken her immune system.
Three weeks after the transfusion, she will suffer from mouth sores and rashes and be confined to the hospital for 45 to 60 days. The recuperation process will take six to seven more months at home. If all goes as planned, however, within a year Kirsten should be back to normal and entirely leukemia-free.
Of course, Kirsten is not aware of all of this. For now she has to undergo blood tests every week, with blood drawn from the base of her hip, but that is the extent of her discomfort.
Her mother said Kirsten never cries or complains during testing, and when she returns home wearing the bandages, she usually hops on her bicycle for a ride.
She only asks me questions sporadically now, usually at night, like why God chose her, Linda said. I think it's because God knows she is a strong person and that she'll be OK. Kirsten said to me, 'Mommy, don't worry. God will give us a miracle.'"
Donations can be sent to the Kirsten Stauder Medical Fund, 2083 Hempstead Turnpike, Suite 178, East Meadow, N.Y. 11554.
