Melody Kramer’s father was diagnosed with non-Hodgkins lymphoma when she was 17. Her family became advocates for lymphoma and leukemia activism, and she signed up for the bone marrow registry as an undergraduate student at the University of Pennsylvania. She wrote a column in Penn’s student newspaper about her father’s experience and, as a result, more than 100 people signed up as possible bone-marrow donors.
That was more than 15 years ago. Her dad recovered. Kramer graduated and moved on with her life.
But in July of this year, Kramer, communications director for the Carolina Population Center and Carolina Demography, received a phone call saying she was a possible bone-marrow match.
“Even if you get that phone call, it’s still really likely that you won’t be able to donate,” Kramer said. “The chances of actually matching with somebody are really, really small.”
In September, Kramer received another phone call. She was a perfect match.
She decided to say yes.
Thus began an extensive preparation process involving thorough blood tests and self-administered shots for five days prior to the donation procedure in order to increase Kramer’s stem-cell count. Kramer said she had a coordinator who texted her every day to make sure she was still feeling healthy.
Kramer said receiving the news that she was a perfect match was humbling. The only information she has about the person receiving her bone marrow is their age, gender and diagnosis. After a year, she will learn the identity of the individual who now shares a piece of her, but it will be up to the recipient to decide whether they’d like to contact or meet Kramer.
“To know that there’s somebody out there who needs this to survive and I could help in this small but significant way is almost overwhelming,” Kramer said. “I love that it’s anonymous, too, because it’s a very meaningful way to feel connected with someone.”
The entire procedure was done at the UNC Bone Marrow and Stem Cell Transplant Clinic, and Kramer was able to take a paid leave of absence from her work at the Carolina Population Center thanks to a University policy. When crafting her out-of-office response, Kramer took care to include the link to her donor registration page and explain what she was doing.
“Sharing this story with the Carolina community was amazing,” Kramer said. “People have signed up to be bone-marrow donors through my out-of-office, which is awesome.”
Kramer also recognized that many people are reluctant to sign up to donate their bone marrow because they think it will be painful. She said that most people envision someone drilling into their hip to retrieve the bone marrow, but she learned that that procedure is only done for pediatric patients.
“For most people, it’s like donating plasma. You sit in a comfortable hospital bed for a few hours and listen to podcasts while the blood is taken out of your body and returned,” Kramer said. “But by the time you get to that point in the process, you’re so invested in your patient that it really doesn’t matter what you have to do.”
For Kramer, being able to donate her bone marrow has taught her the importance of her community and served as a reminder that she can “do hard things,” which is something she tells her toddlers often. It’s an adage that she found comfort in during her experience.
“I don’t think I could have done this alone,” Kramer said. “This involved a lot of people in the Carolina community helping me, and what I found really nice about this process is that there are so many people who help alleviate your fears.”
Kramer hopes to recruit 500 donors through her link at BeTheMatch, an international bone-marrow registry. She said most of the donors chosen as matches are under the age of 44, and there’s a particular need for college-aged Black, Latinx and Asian donors who can stay on the registry longer.
Kramer said she is confident the Carolina community can help her reach her goal and that if her story resonates with people they will feel called to take this step to save someone’s life.
“Not everybody says yes to this,” Kramer acknowledged. “But as soon as I got the phone call, I just thought, ‘I will do whatever it takes to get this person what they need.’”
‘Making a huge impact’
Jack Morningstar, a UNC-Chapel Hill junior studying political science and business, signed up for the stem cell registry and got his cheek swabbed in November of 2018 at a campus event sponsored by Project Life Movement and its clinical partner, the Gift of Life Marrow Registry. Morningstar said he doubted he would actually be a match.
“It’s pretty minimal effort on my part in terms of giving them what they needed,” Morningstar said. “But I ended up getting chosen.”
Morningstar donated his stem cells on Sept. 2, 2020, after five days of Neupogen injections to boost his white blood cell count. Then, at a collection center in northern Virginia, he was hooked up to a machine that collected his blood, filtered out the stem cells and then replaced the blood back into his body. He said the procedure took four to six hours and was a little tiring but not painful.
Project Life Movement Executive Director Ann Henegar said the Charlotte-based organization’s mission is to ensure that all blood cancer and sickle cell disease patients have an equal opportunity to find their life-saving match on the global registry.
“Someone in need of a transplant needs to receive one from someone from their own ethnic background,” Henegar said. “Project Life Movement works with colleges and universities because they are the best place to find young, healthy and diverse people.”
Morningstar said the experience made him happy that he was able to potentially save someone’s life, but he also feels that there’s not enough awareness about these types of registries.
“Given the size of our population, I feel like people shouldn’t have such a hard time finding donors,” Morningstar said. “So, it’s a little bit frustrating to know that there isn’t enough information circulating so people know that they could potentially have a huge impact by doing virtually nothing.”
Project Life Movement, in collaboration with Gift of Life, currently has eight student interns at Carolina actively recruiting students to join the global registry. For more information, visit projectlifemovement.org.
If you are interested in signing up to be a bone-marrow donor, follow Kramer’s link to the homepage: http://join.bethematch.org/melody.