She’s 44 years old and lives outside of the United States and has acute myelogenous leukemia. That is all Joe Knight is allowed to know about the patient that will be receiving his stem cells.
That, and the fact that she could be his fraternal twin. Knight and his donor are a 100 percent match when it comes to the proteins, or “markers,” found in most of the cells of their bodies.
“Our DNA is different, but our blood typing and our tissue type are all the same,” he says. “It would be interesting if she looked like me, but for her sake, I hope not.”
Today, Knight, a Park City firefighter for 18 years, will donate stem cells from his blood at a San Francisco clinic.
He’s been told the process is similar to dialysis and takes about five hours. He’s also assured by the thought that stem-cell extraction is far less invasive than donating bone marrow, which requires a surgical suite and a two-day hospital stay.
Knight will be hooked up to a machine that will collect blood from his arm. Doctors will spin the blood to extract healthy stem cells, then ship them to the 44-year old leukemia patient.
For privacy reasons, the woman’s country will not allow Knight to contact her for two years, but he plans to send along a note with his donation.
“They say it’s supposed to make me feel crummy and that you might have a mild case of the flu, but in the end I think it will be worth it to help someone,” Knight says.
He considers donating his stem cells an honor. “It’s like winning the lottery,” Knight says. He claims his wife, Beth, is jealous — she is also on the donor registry and wishes she had been chosen.
The Knights applied to be bone-marrow donors 16 years ago, which involved giving blood samples. They were at the hospital to accompany a fellow Park City neighbor, Jim Santy, Sr., for his heart surgery and decided to donate blood. They saw a National Marrow Donor Program and decided to join.
Since then, Joe Knight has been contacted three times to get retested as a possible match. Mostly, it’s been a waiting game, he says. The first two times he was eliminated. The third time, this spring, out of 170,000 potential donors, his tissue type matched.
Stem-cell therapy is a relatively new, alternative route to bone-marrow transplants. The cells, often called “mother cells,” are valuable to patients suffering from leukemia, immune system disorder, aplastic anemia and Hodgkin’s disease, because they have the remarkable ability to develop into many different cell types in the body, but will not become cancerous.
In a successful therapeutic application, healthy cells, harvested from bone marrow, peripheral blood or umbilical cord blood, are infused into a patient’s bloodstream, and proceed to move from the blood vessels to the center of the bones where they begin making new, healthy blood cells that will repair the body.
Each year, the National Marrow Donor Program estimates 30,000 Americans are diagnosed with life-threatening diseases that can be treated by stem cells, but that does not include new applications for the therapy, some of which are not approved in the United States.
Park City resident Dena Brehm Gennerman, 39, recently traveled to Shenyang, China, for stem-cell therapy in an effort to repair her brain. At the 463rd Hospital of the Chinese People’s Liberation Army, Gennerman, who incurred a traumatic injury two years ago that left her paralyzed on her right side and unable to speak, received six injections of adult stem cells gathered from umbilical cords.
The therapy alone, on average, can cost $25,000. A fundraiser at Park City’s private club Suede, held shortly after Gennerman’s 2005 bus accident on vacation in Egypt, helped to pay for the cost.
Gennerman’s parents, Eva and Bob Brehm, took Gennerman to China, accompanying her through an additional bone marrow transplant, daily sessions of acupuncture and physical therapy part of the program designed by the hospital. The stem cells came packaged from Beike, a Chinese biotechnology company. Each therapy lasted approximately 20 minutes.
“China had a very disciplined program,” Bob Brehm says. “The doctors, nurses, and therapist were extremely dedicated. I was impressed.”
At the hospital, Brehm met patients from other countries that don’t allow stem cell therapy for spinal cord and brain injuries from the United Kingdom, Romania, Canada and Australia.
“The interesting thing is, [the federal] Food and Drug Administration has approved umbilical cord therapy for blood-related diseases like leukemia for 20 years, but they won’t use it for spinal-cord injuries or brain injuries or Parkinson’s disease, just because there hasn’t been enough research on it,” says Bob Brehm. “It’s really unfortunate.”
According to Brehm, however, the tide is beginning to turn. A Los Angeles doctor, in fact, has asked the Brehms if she can follow Gennerman’s progress.
“Lately, doctors are starting to pay a little more attention to what’s been going on in China,” he says. “They’re seeing results, and it’s very promising.”
Back home in Park City, on the other side of the world, Brehm observes hopeful signs that the alternative approach was worth the trip.
“She is showing some movement in the right side of her body right now and we can have her up and walking with a therapist,” he says. “She seems much more alert and aware of what’s going on.”
Gennerman’s friend, Pamela Alford, who organized the Suede fundraiser in 2005, is likewise seeing improvements.
“I notice that she’s a little bit more feisty,” she says. “She’s giving me more hand signals she puts her thumb up for yes, and down for no It was a crazy amount of work to put on the fundraiser, and it’s really nice to know the money’s been utilized for this procedure.”
For more information about how to donate bone marrow or stem cells, visit www.marrow.org.