For Noah, His Baby Brother, and Thousands More
Nurses are good match as friends and proponents of bone marrow donation
Bone marrow donation is near and dear to the hearts of Tami Pascall, RN, left, and Nancy Valko, RN, co-workers and friends. Photo by Andy Knef
by Kelly Pahl
Nancy Valko met her match in Tami Pascall. The nurses at Barnes-Jewish West County Hospital (BJWCH) spend many night shifts together, sharing stories.
Their conversation lately revolves around Noah, Valko’s 6-year-old grandson. “He is absolutely the sweetest child,” she says.
Shortly after starting kindergarten in 2011, Noah began experiencing flu-like symptoms that he could not shake. He was diagnosed last December with an immune deficiency called hemophagocytic hymphohistiocytosis (HLH). His only chance for survival was a bone marrow transplant, which he received in June.
Noah’s body accepted the transplant but he struggled with severe pneumonia. He, his father, mother and 2-year-old brother had been away from their Edwardsville home at a Cincinnati hospital since April. After a gallant fight, Noah died on Oct. 18.
Noah’s middle brother does not carry the HLH genetic defect. His mother is expecting a baby boy and they recently learned that he carries the defect. His only chance for survival will be a bone marrow transplant.
“Even though Noah has died, we are eternally grateful to his donor,” Valko says. “That person was his only chance. A donor also will be the new baby’s only chance.”
As a nurse for 43 years and an ICU nurse at BJWCH for 13 years, Valko is no stranger to illness. She also has lost two daughters. She copes by learning as much as she can about HLH. “It gives me some sense of control,” she says. “I ask a lot of questions.”
She also copes by spreading the message about the importance of donating bone marrow.
Pascall shares her passion. Now a nurse supervisor, she was a bone marrow recruitment specialist in the early 1990s. “It became a part of me, I really connected with these families,” she says.
Pascall donated bone marrow and was a perfect match in 2008. “About 10 years after I had been tested for the registry, I had a conversation with God about whether I would ever be a match,” she says. “One week later I received a call that I was a potential match.”
She met her recipient, a teacher and mother in her 40s. “She has since passed away, but lived for an additional four years,” Pascall says. “I keep her picture in my office.”
Every year, more than 10,000 people in the United States are diagnosed with life-threatening diseases, such as leukemia, lymphoma, sickle cell anemia and HFL for which a stem cell transplant is the best or only treatment. Donated blood stem cells are needed for these transplantations.
“There is a great need to increase the number of willing participants in the national bone marrow registry,” Pascall says. “We want to raise awareness that a bone marrow transplant saves lives, and to encourage people to get an oral swab for typing. The process is simple and easy.”
Joining the bone marrow registry involves a simple swab from the inside of the cheeks. Volunteers can participate at a community recruitment drive or order a kit online from the Be the Match, the national bone marrow donor program, at www.marrow.org.
Noah’s family is struggling with his loss. But they wanted to share his story, and the message that bone marrow donation saves lives – for Noah, his baby brother and thousands more people who need a bone marrow transplant.
What is HFH?
Hemophagocytic hymphohistiocytosis is a rare but potentially fatal condition in which certain white blood cells (histiocytes and lymphocytes) build up in organs including the skin, spleen, and liver, and destroy other blood cells. HLH may be inherited or caused by certain conditions or diseases, including infections, immunodeficiency and cancer. It most commonly affects young infants and children.
How to Join the Bone Marrow Registry
Blood and bone marrow donors agree to allow doctors to draw blood stem cells from their blood or bone marrow for transplantation.
Doctors search the registry to find an unrelated marrow donor or cord blood unit for patients. Patients need donors between the ages of 18 and 60 who meet health guidelines and are willing to donate to any patient in need.
Most donations do not involve surgery. Doctors usually request a peripheral blood stem cell (PBSC) donation, which is non-surgical. Due to taking a drug called filgrastim for five days leading up to donation, PBSC donors may have headaches, joint or muscle aches, or fatigue. PBSC donors are usually back to their normal routine in one to two days.
Those donating marrow receive general or regional anesthesia, so they feel no pain. Marrow donors can expect to feel some soreness in their lower back for one to two weeks. Most marrow donors are back to their normal activities in two to seven days.