Two years ago, a weird lump appeared on the leg of a Southern Illinois teenager and she would hide it for a couple of months by wearing jeans instead of skirts. The weird lump did something else very strange – it divided into two sets of lumps. That’s when the girl told her parents and the fight for her life began.
Within a week’s period of time, the teenager had visited two bone specialists, a pediatrician and a dermatologist.
The bumps turned out to be myeloid leukemia—a cancerous condition of blood cells in bone marrow and in the blood steam.
“I was still trying to get in my head that I had cancer, and my friends weren’t going to treat me the same way,” said 17-year old De’Sha Woods of Cottage Hills, Illinois, which is near Bethalto. “Mainly, I wasn’t going to have the same life I was having.”
Maybe it will be better.
May 1st began what hopefully will be a new and much healthier life for De’Sha. After rounds of chemotherapy and radiation, months of waiting, some heartache and medical setbacks, she received the potentially life-saving bone marrow transplant at St. Louis Children’s Hospital.
Unfortunately, this is not the case for more than 80 percent of black patients who are searching the National Marrow Donor Program (NMDP) Registry for transplant matches that may be their only hope for survival. One of the main reasons is that there are not enough Blacks or African Americans registered as bone marrow donors.
The Registry launched the Be the One campaign as part of its ongoing efforts to increase diversity among donors in order to help all patients find the life-saving match they need. De’Sha Woods is one of the faces for the National Marrow Donor Registry as a national poster model for the ‘Be the One’ and the ‘Thanks Mom!’ campaigns.
“The wait while searching for a donor is so hard. We’ve been holding donor drives and trying to get the word out at churches, schools and through the media,” said Delores Woods, De’Sha’s mother. “Too many people think that it doesn’t affect them, so they don’t get involved. We tell them that everyone is needed, especially more donors for Black and African-American patients. People need to start listening and learn how important it is for them to join the NMDP Registry. People’s lives depend on it.”
Patients are most likely to match someone from their same race or ethnicity, but less than 10 percent of the individuals on the Registry are Black or African American. And 70 percent of patients do not have a matching donor in their family. These patients turn to the Registry to find a match.
“Cases like De’Sha’s are not rare. Every day more than 6,000 men, women and children search the NMDP Registry for someone who could save their life,” said Jeffrey W. Chell, M.D., chief executive officer of the NMDP. “The patients who search are fathers, mothers, sisters and brothers, neighbors and friends. And you could be the one to give them a second chance at life.”
De’Sha enjoyed a brief time in remission. A little over a year ago, doctors found cancer in her system again during a physical. Although they thought it was again under control, Woods said those lumps came back with a painful vengeance – bigger, darker and covering her entire body.
In November, the doctor said a bone marrow transplant was De’Sha’s best option. Her bone marrow transplant took place six months later, following De’Sha’s second donor match. The first potential donor was a very strong antigen match—meaning similarities were present among the properties examined when immune system characteristics of donors are compared to of patients needing transplants. However, when it was time to give the bone marrow, the donor declined.
“He backed out because of the fear -scared of the hospitalization and losing work time,” her mother said. “The National Marrow Donor Program takes care of all of that—takes care of the medical expense. All is needed is their time and marrow.”
“Every medical expense for the donor is picked up by the patient’s insurance and then of course if there are issues concerning (medical) payment, then the Marrow Foundation will step in and provide assistance if necessary,” said Rick Mason, a NMDP senior education and recruitment advocate for families.
As heart-breaking as it was to find a match then lose it, De’Sha was blessed with a second donor. The second anonymous donor scored as a five out of six antigen match before De’Sha began what doctors said would be her last hope- a final medicine to try for chemotherapy, along with radiation.
“The way you cure fear, you inform them,” Mrs. Woods said. “There are a lot more African Americans who don’t understand it’s important to the African-American community.”
The “Be the One” campaign is helping dispel some of the most common myths about the donation process. Many are concerned that the marrow collection process is painful, that the recovery time is very lengthy and that pieces of bone are removed. In fact, marrow donors feel no pain during the collection process as anesthesia is always used.
“First, there will be some blood drawn for confirmation testing, then a physical from head to toe to make sure they are healthy because we can’t put anyone at risk,” Mason said.
After the clean bill of health, bone marrow is extracted in an operating room while the donor is under general or regional anesthesia to block the pain. With the donor lying on his/her stomach, a few small incisions (not requiring stitches) are made over the rear of the pelvic bone, where hollow needles are inserted to extract bone marrow from part of the pelvic bone called the iliac crest, which contains a lot of bone marrow. The NMDP said the actual amount of marrow donated is only a fraction of the body’s total marrow, and is replaced naturally within a few weeks. Pieces of bone are not removed from the donor.
Most donations are outpatient although some may stay overnight for observation.
Most donors experience some fatigue and lower back pain after the donation, but are back to usual activities after a couple of weeks.
“Then we do follow up for up to a year to that donor to make sure they are okay,” Mason added. “We do everything we can to make sure this donor has a good experience.”
For bone marrow transplant recipients like De’Sha Woods, the procedure itself is described as being similar to hanging an IV bag, with the cells entering the body through a chest catheter.
“We monitor them very closely and the possibility of complications is very low,” said Dr. Robert Hayashi, director of hematology/oncology at Children’s Hospital-St. Louis. “In general, we would expect results in her situation anywhere from 10 days to two weeks.”
The best results would mean De’Sha’s body is producing healthy blood cells again. Hopefully, this medical ordeal will become a medical miracle and De’Sha will be able to fulfill her dreams of becoming a writer. She is eager to get back to doing what she loves—spending quality time with friends and family, including brothers Dezman and Anthony and her father, Rev. Antonio Woods, Sr. – not to mention journaling online and encouraging others to join the national marrow donor registry.
“She still has packets at home to give away,” her mother said. “De’Sha wants to write her story. I believe De’Sha is a testimony.”
Joining the national bone marrow registry is quick, easy, and painless. A swab of cheek cells is taken to determine the donor’s tissue type, which is then added to the Registry. Mason said persons can also join the bone marrow registry online and swab themselves at home.
“People can join online, then a kit will be sent to their home in a few days and it explains with pictures what to do,” Mason explained. “They’ll swab the inside of their cheek, they’ll put it in a postage-paid envelope and from that-they are on the registry.”
The swab is fitted in a grooved placeholder on a card that is returned to the Registry.
Bone marrow donations are considered once-in-a-lifetime opportunities to save another person’s life. There are some medical conditions however, that would prohibit a person from donating their bone marrow. Mason said this includes persons with a history of cancer other than basal skin cancer; persons who have experienced a heart attack or stroke, persons with Rheumatoid arthritis or any autoimmune disorder, and persons with HIV/AIDS, sickle cell disease or blood diseases.
To join the Registry, learn more about becoming a donor or to find out about local drives in the area, go online at www.marrow.org or call the National Marrow Donor Program at Heart of America Donor Center at 1-800-366-6710.