Natali Stanley with her children, Kalina and Trinnean on the day of the bone marrow harvest. Natali shared her picture and statistics about blood cancer to educate friends and family on Facebook.
Sara and Natali holding her Peripheral Blood Stem Cell collection, the second donation for her “Little Match” (as she calls him).
By Jennifer Lane, Editor
Published in the February 13, 2020 issue of the Hardin County Independent
Last August, Natali Stanley received an unexpected certified letter from New York delivered overnight by FedEx. Tears filled Natali’s eyes when she opened and read the letter explaining that because she had previously registered with DKMS she could potentially save a person’s life by donating her bone marrow. DKMS is an international nonprofit on a mission to fight blood cancer.
Natali is all too familiar with what the recipient’s family must have been going through as they searched for a match. In 2009, Natali’s then 4 year old nephew, Brevin was diagnosed with aplastic anemia. He needed a donor to beat this disease. Natali and all of her family joined the national registry. Fortunately, doctors discovered that Brevin’s nine month old brother Blaize was a match and could serve him with a cure. Though Natali was young, she remembers the seriousness of the situation, longevity of the treatment process, and most of all how thankful they were to have found a match so quickly. She learned that it was unusual because 7 out of 10 donor matches are not blood related, making these marrow and stem cell registries so important.
In September 2015, friends and family of Korey Daughenbaugh were asking for anyone interested to participate in a Bone Marrow/Stem Cell Drive held in Hardin County. Korey was needing to find a donor match after being diagnosed with acute myeloid leukemia. After seeing first hand what her family had gone through, Natali registered in honor of Korey with DKMS. Though Natali was not a match for him, her DNA donation was not wasted. Because of the drive, her information has remained in the DKMS database for the past six years. Someone fighting for life due to a blood cancer diagnosis was was looking for a match when it lined up with Natali’s DNA.
As soon as Natali found out that she could help another human in this way, she called her doctor to see if she thought she was healthy enough to be a donor. Natali was relieved when she received approval from her doctor. She began asking for advice and doing anything possible to provide a successful donation to her recipient.
Natali’s transplant team ordered several different medical tests, including confirmation labs, infectious diseases testing, and a physical exam. Confirmation labs narrow down the best match if there is more than one donor found. Natali was found to be a 10 out of 10 genetic match! The recipient’s insurance paid for all costs incurred, including testing, procedures, meals, travel, and stay. If Natali has complications or side effects from the procedures in the future, she will be covered by the insurance.
Natali said since the initial procedure in November, she is continually asked by people if it hurt. Natali said that she was under anesthesia and didn’t feel anything during the surgical procedure to remove the bone marrow from the iliac crest in her hip. “I kind of went into it blind,” said Natali. “Honestly, it’s not unbearable. You’re sore, but when you think about it, the benefits outweigh all of it.”
The surgery was outpatient, so Natali was able to go to her hotel that evening, before heading home the next day. Natali did require assistance after surgery, and she was glad to be accompanied by her spouse Sara, their two kids Trinnean and Kalina, and her mom Angi, who provided much love, moral support, and positive distraction during the unknowns of the process.
Due to HIPAA privacy rules, Natali doesn’t know much about her recipient except that he is young, lives in another country, and has a blood cancer diagnosis. She was able to write one letter of correspondence to the recipient to initiate contact. If Natali receives a letter back, then she’ll be able to have continual correspondence. In her letter, Natali wrote that she is from a small, tight-knit community where everyone is praying for his health. She also told the story of her inspirational nephews Brevin and Blaize, and how he was healed of his cancer, due to a bone marrow transplant. DKMS monitors the correspondence process to protect both parties. Natali hopes to hear from the family, but can relate to the stress of the situation since she’s seen her family go through it. “If they want to be able to contact me, I want them to,” said Natali. “If they want just to go on and be happy because he’s healthy, I understand that too.”
Seven weeks after the bone marrow harvest, Natali was contacted again by DKMS with a request for another donation. Natali didn’t hesitate, but with was filled with worry for her recipient. Since she was still technically recovering from the bone marrow harvest surgery, it was recommended by her transplant team that she not have surgery again so soon.
After several days of receiving injections of synthetic protein to boost her stem cells, Sara drove Natali back to Chicago where her stem cells were extracted through an alternative way, similar to a dialysis treatment, called Peripheral Blood Stem Cell Collection. The process took nearly five hours. Side effects from the procedure, but mainly from the injections, were muscle aches, bone aches, and fatigue. Natali said it was all worth it and she would do it again if needed.
From start to finish, Natali described her transplant team as amazing and compassionate. She was impressed by the medical technology used around her. During both harvesting procedures, Natali recognized the magnitude and urgency of the situation. Medical staff were working together, coordinating each step of the procedure, moving like clockwork, knowing a life depended on her donation. Medical staff was there at the hospital waiting on the donation so that it could be promptly put on a flight. A plane waited on standby for its arrival at Chicago O’Hare International Airport during both procedures.
“Now, I’m in the longest waiting game of my life,” said Natali. “I am waiting on that update.” In the United States, Natali said DKMS will give an update on the recipient after a nine month period, enough time to allow the treatment to take place and work. She’s hoping that the waiting time period started from the initial bone marrow harvest back in November.
Natali said she loves to tell people about her journey, not to pull attention toward herself, but to shift it to the wonderful opportunity and gift we all have inside of us that could potentially help another person. “This is not a look at me,” said Natali. “This is…look what you can do. Look at what you are capable of doing, just by being you.”
Natali went on to say, “It’s such an amazing thing to pay it forward. Now, I am someone’s light in the darkness, and I know how dark that darkness is after experiencing it when Brevin was sick.”
Natali remembers how easy and painless it was to get on the DKMS registry. She said all you have to do is take a cotton swab and rub it on the inside of your cheeks for 60 seconds each. You can request a free swab kit online through DKMS at dkms.org. Natali will remain on the registries since a donor may give bone marrow twice in a lifetime and/or donate stem cells four times in a lifetime.
When the drive was held for Korey in 2015, hundreds of local people registered. A card was sent to all donors with an identification number. To update your name, address or other information, visit dkms.org/update or call 1.866.340.3567. You do not have to have your identification number to make an update.
Facts that Natali learned while being a donor through DKMS, include:
• Every three minutes, an American is diagnosed with blood cancer.
• Every day, at least 21 DKMS donors give patients a second chance at life.
• Every year, over 50,000 people die from blood cancer in American.
• Around 70% of patients do not find a matching donor within their family.
• Every year, over 15,000 blood cancer patients look for a matching donor outside of their family.
• Through DKMS, 82,000 collections have been made.
• The incredible uniqueness of our DNA means finding a matching donor is extremely rare; finding a match is a numbers game, so it is critical that we register as many donors as possible.
About DKMS – DKMS is an international nonprofit organization, founded 29 years ago in Germany by Dr. Peter Harf when he lost his wife Mechtild to leukemia. Peter promised her that he would help every blood cancer patient find a matching donor. At that time, there were only 3,000 potential stem cell donors available to provide a transplant in Germany and within one year of founding DKMS, the number of stem cell donors increased to 68,000. Today, DKMS has offices in Germany (opened 1991), the United States (2004), Poland (2009), the UK (2013), Chile (2018) as well as in India, where we operate together with our partner BMST (2019). DKMS registered over 9.8 million potential donors worldwide. DKMS has over 800 staff members from 20 countries dedicated to helping give every blood cancer patient a second chance at life. DKMS is driven by innovation and invests in our people’s ideas in order to be the premier provider of assistance to blood cancer patients throughout the world. To join the fight against blood cancer or for more information, please go to dkms.org.
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