Guttenberg bone marrow drives yield new match

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Twins Lukas (left) and Oliver Larsson are the sons of Dena (Boardman) Larsson, a Guttenberg native who now makes her home in Colorado. The Larsson family continues to search for a bone marrow match for Lukas, who was diagnosed with a rare blood disease at age 16. (Photo Submitted)

By Molly Moser

The Larsson family of Castle Pines North, Colo., has been searching internationally for a bone marrow match for their son, Lukas, for nearly two years. In that time, and with the help of dedicated family and friends, they’ve held dozens of marrow donor drives. “There are thousands of people worldwide who are waiting for their donors… Every time we have a drive, I think, ‘I hope we saved a life,’” mom Dena Larsson told The Press in November of 2013.

Three drives have been held in Guttenberg since Lukas was diagnosed with pediatric myelofibrosis, a blood disease so rare that only 50 cases have been documented worldwide. A bone marrow transplant will cure him, but until then, Lukas and his family will continue to deal with the reality of his illness. After a year in remission, Lukas recently became sick again – but his family holds on to the hope that his match will be found. In the meantime, doctors are treating Lukas’ condition with the same steroid that put him into remission one and a half years ago. 

Forty-five people from Guttenberg had their cheeks swabbed in Lukas’ name in 2013. “Most people will never match anyone.  It is very rare to match – maybe around one in 750 will match, but won't always be used as the donor,” said Dena, a 1978 Guttenberg High School graduate. Just one percent of Americans are on the bone marrow registry – yet two matches have come from those 45 swabs in Guttenberg. 

Just last month, Guttenberg resident Phillip Rausch gave stem cells to his match, a nine-year-old girl with Leukemia. While eighty-five percent of donors give through the arm during a four to five hour process, Rausch was part of the 15 percent that go under general anesthesia to donate from the hip. Following a three-month process of blood tests and physicals to make sure Rausch was a good candidate, he was given a few details about the little girl who needed his marrow. “That made it easy,” he said. 

Doctors extracted two liters of marrow in just over two hours, explaining to Rausch that the amount was about one quarter of his total marrow and that his body would replenish the marrow completely in three to four weeks. During a visit to the hospital in Iowa City, where the procedure was done, Rausch heard the marrow donation process termed ‘an embarrassingly easy way to save a life.’ “There’s no better way to put it. It’s a week and a half later and I’m back to doing everything I would be doing – other than the highly active stuff,” said Rausch, who has had to refrain from his normally intense workout routine during recovery. “I absolutely would do it again.”

The Larsson family is still searching for a match for their son. He graduated from high school in May and plans to attend The University of Colorado in Boulder with his twin brother. Older brothers Max and Axel have also spent time studying at CU Boulder. 

With three brothers, including a twin, how is it possible that none are a match for Lukas? “Siblings have a 25% chance of matching,” Dena explained. “Lukas' two older brothers, Max and Axel, matched each other but not Lukas or his twin Oliver.” Further complicating the situation, she said, “Oliver is an identical twin to Lukas and the doctors will not use him as donor because of the fact that they are identical – they are too close a match.” 

Parents have just a 5 percent chance of matching their children, Dena told The Press. “That is why we count on the love and support of strangers to help us. We have no other choice.” 

During their search, the Larsson family has learned hard truths about the thousands of people with diseases only a bone marrow transplant can cure. “Fifty percent of people that need bone marrow transplants will not find a match since there aren't enough people on the list,” said Dena. “They will die.”

So the Larssons do what they can to get more people on the bone marrow registry – and as it turns out, their family has the power to accomplish quite a lot. Working with organizations like Be The Match, Delete Blood Cancer, and Love Hope Strength, they’ve registered thousands of people in drives across seven states. During the past two years, the Larssons have been notified of six lifesaving matches found through their drives.

“It is so wonderful to know that what we do helps so many people,” Dena said. Registration requires a 20-second cheek swab and a short form. The only requirement to become a match is to be between the ages of 18 and 55. The easiest way to get registered is to go online to deletebloodcancer.org and sign up. Two swab kits will then arrive in the mail with a one-page form to fill out. Postage is paid on the return of swab kits, and those who prove a match are completely reimbursed for travel expenses like mileage, meals, and hotel stays associated with related appointments.

“We have met so many amazing and inspiring people at our drives!” said Dena. “We have met many donors that said they would do it again in a heartbeat if they could match another person in need. Who wouldn't want to save someone's life?” 

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