Fellowship Story Showcase
Be the Match
If you knew donating just a few minutes of your time and some spit could potentially save a life, would you be willing to do it? How about if you knew you would have to be put under general anesthesia and when you woke up you would have a couple of days of soreness, bruising and aching at the base of your hips and lower back — nothing that couldn’t be relieved by some Tylenol, aspirin or ibuprofen.
Would it be worth a couple of days off work to save the life of someone like Ruben Isom, an 11-year-old Lake Los Angeles boy diagnosed with acute myeloid leukemia?
Thousands of Americans of all ages are diagnosed every year with leukemia and other diseases that could kill them unless they get a bone marrow transplant, which means finding a donor whose marrow is a match, according to the National Marrow Donor Program, now called Be the Match.
Ruben is undergoing aggressive chemotherapy treatment at Children’s Hospital Los Angeles, but according to Dr. Etan Orgel, Children’s Hospital pediatrics hematology/oncology clinical fellow, who is one of several doctors treating Ruben, a bone marrow transplant is Ruben’s best chance for long-term survival — and time is running out.
Although more than 7 million people are registered at Be the Match, no one is a match for Ruben — not even his own relatives.
Because tissue types are hereditary, cancer patients are most likely to match someone from their own race or ethnicity, so it can be daunting to find a donor for someone like Ruben, who is black.
To determine a match, doctors compare the tissue types, specifically human leukocyte antigen tissue types, donor program officials say. The antigens are proteins — called “markers” — found on most cells in the human body; the body’s immune system uses the markers to recognize which cells belong and which do not.
The closer the match between the patient’s human leukocyte anti-gen markers and the donors, the better for the patient.
Donor program officials say blacks make up about 8% of the national registry’s donors; 73% are white and 9% are Latino (7% are Asian/South Asian/Native Hawaiian/Pacific Islander, 3% are multiple race and 1% are American Indian/Alaska Native).
According to the African American Community Health Advisory Committee, based on information given by the Judie Davis Marrow Donor Recruitment Program in Oakland, a bone marrow transplant is often the only hope for black victims of more than 60 different diseases, including various forms of leukemia and aplastic anemia.
However, since so few blacks are registered as donors, blacks receive transplants through the National Bone Marrow Registry just 3.3% of the time, compared to 85% to 88% for whites.
Ruben’s mother, La Toyia Hampton, organized a donor registry drive Sunday at Living Stone Cathedral of Worship in Sun Village.Hampton is hopeful someone will be a match for her son, who is at Children’s Hospital Los Angeles undergoing aggressive chemo-therapy treatments.
Orgel said even though Ruben is being treated with a powerful combination of three chemotherapy drugs, his condition is very serious and finding a bone marrow donor may be the little boy’s only chance for survival.
“The bottom line is we know kids with this type of cancer need a bone marrow transplant. The only life-saving modality to get (Ruben) into remission is a bone marrow transplant,” Orgel said.
When a donor is found, Ruben will undergo radical chemotherapy treatment for five days to wipe out the cancerous cells. That means complete isolation from the outside world because the “magic bullet” concoction takes out the body’s immune system as well.
“Once the cancer is in remission we can do the transplant,” Orgel said. “The only way to get rid of the cancer is to get him a bone marrow transplant. It’s the only life-saving procedure we have at this time.
”The National Institutes of Health describes bone marrow as the spongy tissue inside some of our bones, such as the hip and thigh bones.
Bone marrow contains immature cells called stem cells. These stem cells can develop into red blood cells that carry oxygen through-out the body, white blood cells that fight infections, and platelets that help with blood clotting.
The Centers for Disease Control describes leukemia as a cancer of the bone marrow and blood, and there are two primary types of leukemia: lymphocytic leukemia, which involves an increase of white blood cells called lymphocytes, and myelogenous leukemia (also known as myeloid or myelocytic leukemia), which involves an increase in white blood cells called granulocytes. Either form can be acute or chronic.
Acute forms of leukemia, such as Ruben’s, progress rapidly and, if not treated in time, are usually fatal.
A bone marrow transplant involves replacing the cancer patient’s diseased marrow with a donor’s healthy, blood-forming cells.
For a patient’s body to accept these healthy cells, the patient needs a donor who is a close match, said donor registry representatives, but 70% of patients do not have a donor in their family and depend on the Be The Match Registry to find an unrelated bone marrow donor or umbilical cord blood.
Joining the registry is a life-saving procedure that is quick, pain-less and rewarding, said Hampton, who worked with Donna Collins, an account executive with Be the Match in Santa Ana, to coordinate the bone marrow registration drive.
“Even if we don’t find a match for Ruben right away — we might be saving some other mother’s child. I’m doing this for my own baby, but I want to do it for others, too.” Hampton said when she talks to people about registering to be a potential donor, the first question is “Does it hurt?”
Since samples are collected by swabbing the inside of each cheek, it is a painless procedure that just takes a few minutes. It can be done at a drive or online at the registry’s Web site, www.marrow.org, where potential donors can register and receive a kit.
Here is what people can expect once they have completed the registration, as outlined by Be the Match:If someone is a potential match, that person will be contacted by Be the Match representatives who will verify the candidate is still willing to donate. If the answer is yes, a series of health questions will be asked and further testing done to see if that person is the best match for the patient. Once a match is confirmed, the representative will schedule an information session where the donor will be given detailed information regarding the transplant process including recovery, risks and side effects and must sign a consent form and undergo a physical exam to ensure the transplant is safe for the donor and the recipient.
Donating marrow is a surgical procedure performed in an operating room at hospital.
The donor is put under general anesthesia while the bone marrow is taken — called bone marrow harvest. The marrow cells are harvested from the back of the pelvic bone and the hip. Approximately 10% of the donor’s marrow, or about 2 pints, are collected. This takes one to two hours on average.
Typically a donor may have soreness, bruising or aching at the back of the hips and the lower back for a couple of days — nothing over-the-counter pain relievers can’t take care of in most cases.
Officials said most donors resume their usual activities in two to three days, although some donors may continue to experience symptoms for two or three weeks.
The harvested cells are filtered through fine mesh screens to prevent bone or fat particles from being given back to the patient, then shipped in blood bags just like the ones used to collect blood from blood donors.
The recipient, who is in isolation after the five-day round of powerful chemotherapy, is prepped for the transplant procedure.
The cells are injected into the body through an intravenous line — typically a central line — a tube that is surgically inserted into a vein in the patient’s chest.
Depending on the volume of cells being injected, the infusion process takes an hour or so and does not hurt.
Unlike the donor, the patient is mildly sedated and awake while undergoing the transplant procedure.
Believe it or not, those donated cells “know” where they belong in the body and will move through the bloodstream to settle in the bone marrow, where the healthy cells will begin to grow and produce new red blood cells, white blood cells and platelets — called engraftment.
After a patient receives a bone marrow transplant, the doctors will monitor his or her condition carefully, particularly during the first 100 days after the procedure, when the patient is most at risk for complications. Once the donated cells engraft, the patient’s blood cell count will rise and the immune system will become stronger.
A transplant team will continue to monitor the patient for complications although the patient may be released from the hospital earlier and receive care as an outpatient.
This article is the third in a series developed as a project for The California Endowment Health Journalism Fellowships, a pro-gram of University of Southern California’s Annenberg School for Communication & Journalism.