Havelock mother pushes for bone marrow donors to help son, others
Tameka Forte is an ambassador of hope who’s seeking a few good men and women.
Maybe a few thousand.
Forte is the area representative for “Be the Match,” a national registry of potential bone marrow donors — donors who can give hope and life to victims of sickle cell anemia (SCA).
SCA is a red blood cell disorder in which the sufferer has abnormal hemoglobin, which is a protein in the cells that carry oygen through the body.
SCA is inherited when both parents carry an abnormal hemoglobin gene and pass it on to their child. According to Forte, if the child receives those genes, he or she has a one-in-four chance of developing a sickle cell disease of which sickle cell anemia is most common.
Hemoglobin is shaped rather like a doughnut without a hole. Being flexible, it is able to travel through the veins carrying oxygen, but in sickle cell disease (SCD) those genes are sickle-shaped — somewhat like a crescent. They can get hung up in the blood vessel walls causing blockages that can cut oxygen off from nearby tissues — or even stroke.
Forte carries that gene, though she didn’t know it when she married her husband, Rodney, who also carries it.
When she was in the military, she was told she didn’t carry the gene but after she was out and married, she said, “28, 29 weeks into my pregnancy, they told me I was sickle cell trait positive.
“I was devastated. I made them redo the test five or six times,” she recalled.
When her newborn son Thor (“I didn’t know anything about the character or the movies,” she vowed, “I just thought the name was cute”) turned 3 weeks old, a test showed her son was positive. “My entire life has been back and forth out of the hospital (with him),” she said.
When the sickle cells clump in the brain, she said, “It causes excruciating pain. I knew one day I would have to deal with that.”
The day came when he was 3 years old.
“We couldn’t pick him up, we couldn’t put him down. He just cried and begged to take the pain away,” she remembered. “It was bad.”
To help deal with the pain, he was prescribed opioids. “Oxycodone and three, four, five?” she said. “That’s how bad the pain was.”
A transcranial Doppler scan showed the young boy was at high risk for a stroke. That was when Forte knew she was in a race for time.
The doctors began transfusion therapy, inserting a port in his chest for the purpose. “Every four weeks, then five, then six.” The transfusions ultimately led to an iron overload in his body, so he was given Exjade, a medicine designed to counteract the overload.
She realized that, ultimately, it may take a bone marrow transplant to save her son, and she started a long hunt for a match that, still unsuccessful, has led her to her ambassadorship with Be The Match.
SCA is not a cancer, but its treatment has similarities.
Our bones are hollow, and marrow fills them. That marrow’s job is to create blood and, when SCA is involved, it creates hemoglobin S, the sickle-shaped cells.
When a transplant donor is found, the doctors begin the transplant by destroying the patient’s original marrow through chemotherapy and sometimes radiation.
As the marrow is destroyed, the patient’s risk of infection is high and so he or she will be in isolation at the treatment hospital. The treatment may include medicine to fight infection, blood transfusions and possibly being fed through an IV.
Marrow cells are injected into the patient’s blood where they travel to bone and reproduce. Over several days they begin producing blood on their own.
The injection is through an IV with marrow that “looks like a small bag of blood,” Forte said, and takes a couple of hours.
Then, “you wait 30 days and hope that it takes.”
According to the U.S. National Library of Medicine, the treatment can have a number of risks, and can take up to a year of recovery time, but it “may completely or partially cure your illness” and “you can go back to most of your normal activities as soon as you feel well enough.”
Some cancers, such as leukemia, lymphoma, myelodysplasia and multiple myeloma, can also require marrow transfusions.
Finding qualifying, genetic matches isn’t easy, according to Forte. “It’s really hard,” she said. “The human tissue has 10 markers that are compared between donor and recipient, she said: ideally a perfect match is sought. The fewer matching markers there are, the less likely the transfusion will take. … I’ve had people tell me they’ve been on the registry 15 years.”
Forte said more people on the registry are desperately needed.
Part of the reluctance, she noted, is that people fear the pain potentially involved in donating marrow — a process that involves putting a needle into the hip bone to extract it. The procedure is done under general anesthesia so the donor is asleep when it happens — although they will be sore for two or three days after. But many people are under the assumption they will have to make the donation while awake, in a tortuous process.
Not helping is a well-known episode of “House,” the now-defunct television show about an anti-social, genius doctor portrayed by British actor Hugh Laurie. In the March, 2007 episode, titled “Family” a young man donates marrow for his leukemia-stricken brother and must give it without anesthesia. His pain in the episode is played up.
“You’d be surprised how many people walk away just because of that TV show,” she said.
The ignorance of how marrow is extracted comes in other ways, too, she said. “I’ve had people ask me if they would take my bone and break it in half just to take my marrow,” she said.
Forte is disappointed at the number of minorities who refuse to sign on as potential donors as well. Only 6 percent of donors are black, she said, while Hispanics make up only 10 percent of the registry. This can be a problem for recipients: while a donor can come from any race, chances are higher of finding a donor from someone who shares ancestry.
Forte, who is black, recalled how she’d set up a table at the Bridge Run looking for registrants. “Not one African-American came to the table,” she said. “They weren’t interested.”
She believes everyone of every race should be taking part and offering their marrow to save lives.
“Three or four days of soreness can’t compare with what the patient has to go through,” she said. “I don’t know how many people are in this world. But there’s no reason why every healthy person walking around here shouldn’t be on the registry. I don’t understand it. it’s free.”
The next Be the Match registration drive will be from noon to 4 p.m. April 29 at ATA Martial Arts, 130 East Main St., Havelock. For information on becoming a registrant, call 704-942-6971 or go online to www.bethematch.org.