AML patient raises awareness in community about national stem cell registry

By the age of 28, Dana Severson was already an Iraq war veteran, an accomplished clinical engineer, a wife and mother.  Days following her daughter Genevieve's first birthday, Severson was faced with a reality that would turn her life upside down. After several weeks of experiencing severe headaches and extreme exhaustion, the young mother was diagnosed with acute myeloid leukemia (AML).  Shortly after her diagnosis, she met Northwestern Medicine oncologist Jessica Altman, M.D. Together, the two women launched a battle against the cancer that tested Severson's strength, but ultimately saved her life.    

"Dr. Altman said to me 'It's not going to be easy, you will lose your hair, but we will beat this,'" said Severson, who recently celebrated the two year anniversary of the stem cell transplant that saved her life.  "I went through one round of high dose chemotherapy and most of the cancer was gone, but not all of it.  During the second round was when we began searching for a stem cell donor."

AML is an aggressive cancer that starts in a person's bone marrow.  While AML is the most common acute leukemia in adults, the median age of diagnosis is in the late 60s.  As the cancer progresses, the healthy blood cells are replaced by cancer cells, putting the patient at high risk for infections and complications of bleeding. When chemotherapy fails to stop the cancer, or if the leukemia is likely to come back despite chemotherapy, clinicians turn to allogeneic stem cell or bone marrow transplants to replace the patient's abnormal cells with a healthy patient's cells. Stem cells are any cells in the body that can grow into other cells. The hematopoietic stem cell transplant program at Northwestern Memorial Hospital is the largest in Chicago and amongst the largest in the country, with more than 250 transplants annually.  

"We first tested Dana's sister, but she wasn't a match so we began searching the national registry," said Altman. "It can take three to six months to locate a compatible stem cell donor for a patient.  In Dana's case, we were able to identify a donor relatively quickly."  

Severson's stem cells came from an anonymous donor located through Be the Match, a national bone marrow and stem cell registry with more than 8 million donors and 160,000 searchable cord blood units.  Severson underwent the stem cell transplant on October 14, 2008, a day she now refers to as her "second birthday."

She slept through the transplant, which was a procedure similar to a blood transfusion, but the days and weeks following were challenging. Her immune system was suppressed and then replaced with the donor cells, forcing her to stay at Northwestern Memorial's Prentice Women's Hospital for approximately two months. "My daughter was my inspiration during that time," Severson said. "She would visit me every Sunday and we would take walks in the hall.  She would wave at the other patients and nurses and bring joy to a lot of people."  

Severson was able to return to work 10 months after her initial diagnosis.  She remains cancer free at the age of 30. Severson has tried to contact her anonymous donor, but hasn't yet had the opportunity to thank him personally. "I wrote a letter on my first and second anniversaries, but haven't received a response," Severson said. "The past few years, I attended the Light the Night Walk for leukemia research and would see other patients I knew from when I was in the hospital. When I returned the following year, some of them were no longer there.  The families were now walking in their honor.  It made me so grateful that I'm here and I realized I wanted to do something to give back."  

Severson has now dedicated herself to raising awareness by speaking on behalf of Be the Match, as well as fundraising for the national registry.  An avid runner, Severson proudly displayed the organization's logo when she ran the Nashville half-marathon last April and the Las Vegas Marathon in December. She is also organizing a Chicago-area 5K run in the spring that will raise money and register donors at the event.  

Severson, whose own story is a testament to the registry's success, wants people to understand the simplicity of the process. "Donors who register online have to pay, but at these events willing donors can sign up for free and give the initial cheek swab to be entered in the database," she explained. "The more people we can get registered, the more lives we can hopefully save."  

One key audience who has been influenced by Severson's experience is her family.  All of her family members who are able have joined the registry.  Through that, Severson's advocacy and experience may directly save a life.  "A few weeks ago, my husband Keith was contacted that he is a potential match for a teenage girl who has the same leukemia that I had," said Severson.   "We're waiting to hear what next steps are, but it would be amazing if he could help someone going through the same thing I did."

Altman, who herself first joined the registry in college, is impressed by both her patient's will to live and devotion to helping others.  "Dana is an inspiration," said Altman. "To go through her experience and then do all she has done to raise awareness and get others registered is truly remarkable."