Freshman education major Erin Rasmussen’s life changed when she joined the bone marrow registry. Rasmussen’s inspiration to donate was triggered by a Maggie Murry’s search for a bone marrow match to save her sons’ lives.
During the summer before her freshman year, she received an email stating she was a bone marrow patient’s match. Rasmussen said she matched a man in his late 50s who was suffering from leukemia.
Rasmussen was a senior at St. Teresa’s Academy in Kansas City, Mo., where she attended a bone marrow drive sponsored by Delete Blood Cancer (DKMS) called “18 and Swabbing.” Rasmussen said it was there that she heard the Murry family’s story.
“The boys’ ages were similar and they were going through high school and college not knowing if they were going to outlive their parents, or even have a full life,” Rasmussen said.
At the bone marrow drive, Rasmussen said Parker Murry spoke to her senior class about her four nephews who have a blood disorder. Parker’s sister-in-law, Maggie Murry, mother of Parker’s nephews, said she has actively run drives for the past two years in hopes of seeing her sons’ heroes.
The Murry Family
Maggie Murry has four sons – Sean, 23; Patrick, 19; Danny, 13 and Timmy, 10 – all of whom have a rare blood disorder called Diamond-Blackfan anemia (DBA) that makes it difficult to produce red blood cells.
Maggie Murry said she was told by her doctor that DBA is rare because it is highly uncommon for siblings to have it. Maggie Murry’s oldest son, Sean Murry, was diagnosed with DBA at birth. She said less than 500 people in the United States have it, and the only cure that exists is a bone marrow transplant.
“Watching these boys endure all they’ve had to endure is hard for a parent,” Maggie Murry said.
Maggie Murry said Sean Murry has had about 300 doctor visits. As Sean Murry grew up, she said he spent eleven years hooked up to a pump at night with needles dripping medicine for eight hours. Now he takes his medication orally once a day.
Maggie Murry said the older the boys get, the harder it is for them to maintain a healthy level of iron. Sean Murry and Patrick Murry have blood transfusions three times a week, while the younger two undergo a steroid regimen. The steroid regimen allows them to produce red blood cells, but as they get older, they, too, will need a transplant.
Maggie Murry said she and her husband that Tim Murry calculated by Patrick Murry’s first birthday, he had spent five months in and out of the hospital. She said Patrick Murry has said he has wanted to be a doctor since he was six years old. She can recall him saying, “I want to be a doctor because I want to save Sean.”
Maggie Murry said time is ticking with Sean Murry, now 23 years old. Doctors told Maggie Murry that Sean Murry’s condition might only allow him to live into his 30s.
“I can’t tell you how much it hurt – to think you might outlive your own kids,” Maggie Murry said.
Maggie Murry said when Danny Murry was in fourth grade, he found out the illness was life-threatening. She said once he realized his brother might die from it, he realized he might as well.
The process of giving
Rasmussen said at bone marrow drives, a person uses a cotton swab to gather saliva from both sides of their cheeks. This is then placed in an envelope and shipped off to the National Bone Marrow Registry. The NBMR will then see if someone is a DNA match with a patient on the registry list.
“You can be on the list till you’re 60 years old,” Rasmussen said. “Some people receive an email that they’ve been matched in three months or never.”
Rasmussen said the hardest part of the decision process was giving blood. She was severely afraid of needles. Her first time giving blood, the nurse had trouble finding her vein.
“It was between getting over my fear of blood and saving someone’s life,” Rasmussen said.
Rasmussen said the organization DKMS walked her through the whole process. She said they drew blood to make sure she was a perfect match and performed physicals to make sure she was in good health.
Rasmussen said there are many misconceptions about the pain caused by the way bone marrow is donated. She said a donor can give in one of two ways. According to deletebloodcancer.org, when someone donates through Peripheral Blood Stem Cell (PBSC) donation, stems cells are collected through a blood transplant. The second way of donating is the extraction of marrow cells through the pelvis.
Maggie Murry said people assume donating through bone marrow extraction is extremely painful. She said people who have donated through extraction compare it to falling on ice.
“I would suffer a fall on the ice to save a life,” Maggie Murry said.
Rasmussen said she donated through PBSC. Leading up to donation day, the doctors injected her with a synthetic protein called filgrastim. Rasmussen said she experienced soreness in her chest and lower back due to the medication.She said the doctors advised her of the risks, such as an enlargement of her spleen.
Rasmussen said the more tests she participated in, the less she feared needles. She also said she felt prepared to donate because she was consistently made aware of what she was going to do.
During Rasmussen’s fall break, DKMS flew her to Washington D.C. and covered all expenses. She said she was allowed to bring one guest, so she brought her mother.
“Once I was in there, I was pretty free from stress,” Rasmussen said. “It was not as scary as I imagined.”
Rasmussen said she had IVs attached to both arms that were hooked up to a machine that separated stem cells from her blood. She said she spent about seven hours dispensing blood.
“It wasn’t painful at all,” Rasmussen said. “I felt exhausted and sore afterwards, kind of like I had just been working out or I had a big performance.”
According to the DKMS website, blood transfusion is a patient’s last chance after chemotherapy, and more than 13,000 patients are on the registry.
Maggie Murry said it is like being on an emotional roller coaster. She said both Sean Murry and Patrick Murry had a match in Europe. The girl was matched and ready, but something happened the day of the donation and she was unable to give.
Maggie Murry said her family and her faith have been a huge support system.
“This can’t be the end-all-be-all,” Maggie Murry said. “This cannot be their life for however long it is.”
The Murry family continues to host drives throughout the U.S.
Rasmussen said four out of ten patients receive a match. The rest of those six out of ten may never find a match.
“I think it definitely changed my life. It made me realize I could make a difference in some way — this just so happened to be my way,” Rasmussen said.
Rasmussen said the donation process is anonymous and she will be able to meet her recipient in a year if they both choose to meet.
Rasmussen held “Swabbing for Lives” Monday, April 8. About 103 attended the on campus drive and became part of the registry. Rasmussen said she plans to have an annual drive in hope of saving more lives.
Maggie Murry said the thought of donating can be scary, but urged people to give themselves the chance to be a hero.
“You might look down and look at your own child and think, ‘Man, I would do anything to save him,’ and you would do it. By saving someone’s life, you are changing the lives of an entire family,” Maggie Murry said.