Leukemia survivor goes to Washington to lobby lawmakers

Wednesday , June 18, 2014 - 12:00 AM

Standard-Examiner correspondent

SYRACUSE - A teenage cancer survivor traveled to Washington D.C. to urge lawmakers to continue funding life-saving marrow and umbilical cord blood transplants.

Shannon Johnson, 14, is a leukemia survivor who said she wouldn't be alive today without a cord blood transplant. She and her mother Vickie went to the nation's Capitol on June 12 to meet with lawmakers on behalf of Be The Match, a non-profit organization that connects patients with their donor match for a bone marrow or umbilical cord blood transplant.

"When I was 8 years old I started getting a lot of bruises. My mom thought it was just from being a kid but I started getting more and more so she took me to the doctor," Shannon said. "He did some blood work and came back in the room and told my mom he needed to talk to her alone."

Shannon's mother was told her daughter had leukemia and would need to be taken to Primary Children's Medical Center immediately.

"Being that young I didn't understand what cancer meant," Shannon said. "I just thought it was like having the flu or something."

After seven months of chemotherapy, Shannon’s doctors told her she was in remission and could return to school. A year later, the cancer returned.

"I noticed a lump on my leg and also if I scratched myself it would instantly bruise," she said. "I had to go back to the hospital and go through chemo again but this time the cancer had spread a lot so they said I would need a bone marrow transplant or a cord blood transplant."

Be The Match Registry found a matching cord blood unit for Shannon. After receiving the transplant and full body radiation, Shannon was declared cancer free.

"I am all cured of the cancer but I lost all of my hair and after the transplant I couldn't go out a lot because my immune system was shot. I had to get all of my baby vaccinations again because I had lost all immunity to them."

Today, Shannon is living the life of a normal teenage girl. She plays the violin and was just elected as a student body officer for her next year at Syracuse Junior High School.

"I am going to Washington D.C. because more people need to know how important bone marrow and blood cord donations are," she said. "It saved my life. I wouldn't be here today if it hadn't been for the transplant."

Every four minutes someone is diagnosed with a blood cancer, according to Be The Match. Seventy percent do not have a match within their family.

"You end up having to go out to find one," Vickie Johnson said. "We are so grateful for the donation. This is a transplant unlike all the others because no one had to die in order to give and it saved my daughter's life."

Johnson said her daughter has been a fighter from day one.

"She is strong and she has always been happy and positive. I think that, along with the support of her friends, family and her faith kept her going. We were really touched by all of the people in the community, even strangers, who offered help and support. It really restored our faith in humanity."

Be The Match relies on federal funds provided by these programs to grow the nation’s ranks of volunteer bone marrow donors, as well as to increase the inventory of cord blood units, which contain the same blood-forming cells as bone marrow, according to the organization.

Under sequestration, the programs have been cut by approximately $3 million, meaning that as many as 20,000 willing volunteers and 1,000 cord blood units may not be added to the national registry. Restoring pre-sequestration level funding to both programs will help more people find a match and will save lives.

“We’ve facilitated more than 61,000 transplants and conducted research that has helped increase transplant survival rates significantly,” said Dr. Jeffrey W. Chell, chief executive officer of Be The Match. “But there is still more work to do. First, we must remove the greater barrier to transplant, which is a lack of insurance coverage. Second, we urge Congress to maintain its commitment to Americans in need of these types of transplants by providing continued funding to maintain the unprecedented life-saving momentum we’ve gained over the past 27 years.”

Visit www.BeTheMatch.org/Advocacy to learn more and get involved.

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