On September 7th, the Be the Match Walk-Run St. Louis will take place at Tremayne Shelter at Creve Coeur Park. (Registration and Event Village open at 7:30 a.m. and the Tot Trot, 5K and 1K events begin at 8:45 a.m.) The event will help raise money and awareness for the National Marrow Donor Program. There will also be a donor drive on site. The event starts early, but you can still be a part of it. To walk/run costs $35, and donations to the Be the Match organization are welcomed as well.
In honor of this event, I thought I would share some donor stories from people in the St. Louis area who are also involved on the local organizing committee for this event. The goal is to “dismiss the myth” about bone marrow donation. Read below for their stories.
Jacob, Age 25
Jacob is a med student at St. Louis University and heard about bone marrow donation via the company DKMS which works with Be the Match foundation to recruit potential donors. Jacob signed up to be a donor in March 2010 and then began working with Denise at Be the Match St. Louis to organize more drives in his area. In October of that same year, he received the call that he was a match for a 7 year old boy who had leukemia.
He was working in the lab when he received an email that read “Urgent! Please read and call immediately!” Later, he was asked to do a bone marrow donation via aspiration where they surgically remove the marrow through the pelvic bone. He was under anesthesia and his procedure should have been an outpatient one, but he had a scratched cornea at the time and had to stay overnight. He mentions that though at the site he was “sore as hell for a day or two,” but the scratched cornea hurt worse than his backside. After the donation, he said that he felt accomplished and proud that he could help someone out in need.
Jacob is in contact with his recipient who is now 10 years old. His recipient had multiple transplants from multiple donors and although he is dealing with some complications from these transplants, he is doing well overall. Jacob states that this boy’s family is very involved with Be the Match and fundraising events.
One myth Jacob would like to dismiss about donation is that to register is a difficult procedure. It isn’t. All it takes is a cheek swab. He encourages potential registrants to become aware of what are the different types of bone marrow donations and make sure you are willing to donate if you’re asked to do so. Jacob ends by saying, “The donation process itself is very involved, but if you’re found to be a match, you’re helping one person and their family. You’re making such a large difference in their life. It’s so worth it.”
Lillian, Age 51
Lillian joined the Be the Match registry because one of her church members needed a transplant. She was not a match for this person, but 19 years later she got a call that she was a match for a 37 year old man. She received a FedEx package on a Saturday in April 2012 with all of this information and a letter that read that she should call immediately. She was anxious because she had been on the registry for so long, but she called immediately.
Lillian had to fly to Washington D.C. courtesy of the National Marrow Donor Program to donate via a bone marrow aspiration. She had to go there due to scheduling and the patient’s needs. Her bosses were very understanding and she was allowed as much time off as necessary. She said earlier she had done a PBSC donation (where stem cells are taken from the blood) she felt a little tired and that was all. She later learned that the PBSC transplant didn’t work and she felt very sad. With the bone marrow aspiration, she did say that there was soreness and stiffness at the site upon recovery. She took Extra Strength Tylenols and two days later walked over 3 miles around the D.C. area. She had no other side effects.
However, when they asked her for a marrow aspiration, she spoke with the doctor about the process and decided to proceed with the donation. She knew she could give her recipient a chance, but she didn’t know if she would be helping him buy a few more weeks, months or years. All she knew is that she was buying him more time on earth to be with the ones he loved and that was worth it for her.
Lillian also encourages others who are thinking of becoming a marrow donor to not let others deter you from inquiring about donation. She encourages people to seek out a Be the Match agency or talk with another donor. She said the entire staff was diligent about her well-being and health. She believes they were looking out for her and she didn’t feel like she was being used or taken advantage of. In fact, the transplant doctor gave her such a complete physical and encouraged her to keep staying healthy and taking care of her body. Lillian and her recipient have just hit the 1 year mark when anonymity can be lifted and they have a chance to get in contact with one another. She hopes that happens.
Valerie learned about Be the Match at a donor drive held on her university campus. She became curious because the family of a local high school student was hosting this drive. Before being matched by the National Marrow Donor Program (NMDP), Valerie had donated peripheral blood stem cells (PBSC) via a process called apheresis to a childhood leukemia research laboratory at Cincinatti’s Children Hospital. Once she donated, both her mother and sister signed up as well.
Valerie got the news she was a match for a 7 year old boy with Acute Lymphoblastic Leukemia (ALL) when she arrived at work on a Friday last year. She checked her email and in her inbox was a message from the NMDP saying to contact them immediately as she was a potential match for this person. She called right away to schedule further blood testing and then she immediately called her parents.
She is not in contact with her recipient but recently heard from the NMDP that he is recovering well. Since donating, she has participated in several donor drives to help spread the word. Like Jacob and Lillian, Valerie donated via a bone marrow aspiration from the pelvis. She says the most common thing she is asked is, “Isn’t donating painful?” She wants to stress that the marrow harvesting is done under general anesthesia and the donor feels no pain during the process. She arrived at the hospital at 4:30 a.m. and was released by 4:00 p.m. that same day. “And PBSC harvesting is so simple that you can watch television during the procedure,” she says. She wants to stress to people that being a marrow donor isn’t like being a blood donor. You can’t just show up and expect to be the match. Donors and recipients must be carefully genetically matched and so it is important to get on the registry and be patient because you never know when you will get that call.
Jeff, Age 44
In 2007, Jeff joined the registry in hopes of being a match for a family friend who was diagnosed with leukemia. Sadly, a match was never found for her and she passed away shortly thereafter. But, in the fall of 2009, Jeff got the call that he was a match for a 16 year old girl who also was diagnosed with Acute Lymphoblastic Leukemia. Jeff knew that he could not only help give this young girl more time on earth, but if the marrow grafted, she could be cured of the disease altogether. Without hesitation, he agreed to fly to Washington D.C. from the St. Louis area (again due to scheduling and the patient’s needs) to have his marrow harvested.
Jeff is a father of 2 children and so knowing his recipient was a teenager resonated with him. Many people asked him, “How can you donate to a complete stranger?” and Jeff would always respond with a question, “What if it were your child?” He was not afraid to donate except that he worried about being 40 years old and having his marrow given to someone so young. He was reassured that he and his recipient were a perfect genetic match and he was her best shot at a new lease on life.
Through the anonymous letter writing program at the NMDP, Jeff and his recipient and her family stayed in contact during the entire procedure. Jeff encouraged her to stay strong and keep laughing and staying positive because those were beneficial medicines as well. In one letter, he wrote to her that he knew what it was like to have his wife as his “soul mate”, his brother as his “blood brother” and now he could say that they were “marrow mates.”
After the procedure, which wasn’t so bad, his kids made fun of him saying that he “walked like their grandpa” because he was stiff and sore. He recovered the same day. One year passed and Jeff and Kim, his recipient, got in contact. Jeff and his wife flew out to Washington state to surprise her at her 18th birthday celebration. Now, 2 years later, both Kim and Jeff are passionate advocates for Be the Match foundation and are involved in bone marrow drives and fundraising events, even lobbying Congress for funding and awareness for the program. Most importantly, Jeff feels so much joy knowing that through his one day of donation Kim can now look forward to a bright future and make all the plans she has ever wanted and can chase after every one of her dreams.
If you’re interested in becoming a donor or would like to donate money to the cause, click on the link above in this post or to the right of this page. You could be like these four donors and be the one to save a life!