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Aplastic Anemia News - Return to News Menu
Searching for a cure
By Brian Bowling
TRIBUNE-REVIEW
January 5, 2006 - Steven and Heather Decker have only raised a few thousand of the $380,000 they'll probably need to save for their son's bone marrow transplant, but their main worry at this point is finding him a compatible donor.
Paul Decker, 2, has an aplastic anemia, which means his bone marrow isn't producing enough blood cells. The disease leaves his body starved for oxygen and also puts him at higher risk for infections and uncontrolled bleeding.
His best hope for a cure is to get new bone marrow, but Paul already has been compared to everyone on the national bone marrow donor list without any luck. Doctors also have ruled out any of his immediate relatives as possible donors.
"Finding a match is going to be like finding a needle in a haystack, so we really need to get as many people on the list as we can," said Heather Decker, 35, of Monroeville.
The most likely donor would be someone with B-positive blood and of German and Irish ancestry.
Heather Decker said the first signs of her son's disease surfaced when he got a stomach flu at 9 months and his red blood cell count dropped to a critical level. Her brother died of aplastic anemia at 16, but doctors advised her that the disease isn't hereditary. As the symptoms such as fatigue and low blood counts kept adding up, she pushed to have him tested for the disease.
"He kept getting infection after infection," she said.
A biopsy in March at the Children's Hospital of Philadelphia confirmed Paul had aplastic anemia.
One reason she pushed for an early diagnosis was so the family would have as much time as possible to find a donor and raise money for the transplant. Her brother was diagnosed at 13, but her family still was searching for a donor when he died three years later, Heather Decker said.
Steven Decker, 36, said when his son is healthy, it's easy to slip into a state of denial and pretend nothing's wrong. Then, the nightmare reasserts itself the next time he gets sick.
"The trips to Philly and everything -- it's just agonizing," he said.
They have to take things a day at a time, but there's the constant worry that the next infection or illness will push their son from moderate to severe anemia, Steven Decker said.
"If he gets attacked with something big, it could shut down his system," Heather Decker said.
As soon as they had the diagnosis, the Deckers started organizing blood drives to search for a compatible donor. Heather Decker went door-to-door with fliers asking people to donate blood and add their names to the bone marrow donor registry. When someone volunteers as a potential bone marrow donor, their blood is tissue typed so it can be compared to the tissue of people who need a marrow transplant.
In a series of blood drives this fall, more than 170 people in the Pitcairn-Monroeville area donated blood. Two more drives are scheduled for Jan. 27 at Gateway Senior High School and Jan. 29 at the Monroeville Community Church on Tilbrook Road.
Heather Decker said they're hoping to cast a wider net by holding blood drives in other parts of Western Pennsylvania.
"All we need is a building. I can take care of everything else," she said.
The Deckers are particularly looking for any German or Irish clubs willing to hold blood drives since their members represent the best chance of finding a compatible donor for Paul.
People who aren't likely candidates as a bone marrow donor still can help by donating blood in Paul's name. Each donation gives him a credit to cover the cost of a unit of blood used in medical procedures.
Meanwhile, the Deckers also have set up a medical expense fund and are seeking donations. Their insurance covers hospitalization but not doctor visits.
Heather Decker said they set up the fund to make it clear the donated money would be used only for expenses related to Paul's treatment.
"We have everything specifically spelled out -- what we can and can't spend it on," she said.
Under the terms of the fund agreement, any money left over after Paul Decker is cured will be donated to the Anaplastic Anemia Foundation.
Brian Bowling can be reached at bbowling@tribweb.com or (412) 320-7910
To help
* To donate blood in Paul Decker's name, call the Central Blood Bank at 866-DONORS-1.
* To contribute money toward his medical costs, send a check for the Paul Decker Medical Expense Fund to National City Bank, 2727 Stroschein Road, Monroeville, 15146.
* Donations also can be made at any National City Bank branch.
* To volunteer a location for a blood drive, call Heather Decker at 724-989-8491.
Passionate about his patients: Doctor renowned for bone marrow transplants
Richard Halstead
07/30/2006 - Dr. Mort Cowan is the head of bone marrow transplantation programs at UCSF Children's Hospital. He examines Aaron Aranda, 10, at the clinic as Aranda's great-grandparents Willam and Virginia Miller watch. 'Every patient is like a child of his,' a mother of a former patient of Cowan's.
ANYONE WHO saw Kentfield resident Mort Cowan playing with a group of children at San Rafael's Marinwood Community Center last month might have imagined he was entertaining his grandchildren.
And they would have been right about one thing: Cowan bestowed the gift of life on many of these kids.
Cowan is director of the Pediatric Bone Marrow Transplant Program at the University of California at San Francisco's Medical Center. The meeting in the park was a reunion of 30 bone marrow transplant recipients and their families.
Among those attending was Gina Long of San Rafael and her 3-year-old daughter, Annabella. Annabella was only 2 months old when Long noticed unusual bruising on her daughter's body, and doctors at UCSF discovered that the number of platelets in her blood were abnormally low. As a result, Annabella's blood wasn't clotting as it should.
"She was going nowhere," Cowan says. "She was requiring transfusions every week. At some point, her body would have become resistant to the transfusions. I got very nervous."
Cowan performed a bone marrow transplant on her in May 2004. Annabella hasn't required a transfusion since.
"It was a total miracle," Long says.
There were many tense moments along the way. Annabella had to be given chemotherapy to suppress her immune system to make the procedure possible. There was a 30-percent chance that the infant wouldn't survive the transplant. Through it all, Long says Cowan was there for her and her family.
"I felt like he was my father and Annabella was his granddaughter," Long says. "Every patient is like a child of his. He's so passionate about
Dr. Mort Cowan of Kentfield is building a scale model of a Hudson steam locomotive in his neighbor's back yard and making all the parts himself. (Special to the IJ/Darcy Holdorf)
the work he does and the care the patients receive."
On an average day, Cowan, 61, rises at 5:30 a.m. and arrives at UCSF's Children's Hospital at 7 a.m. where he exercises in the gym for an hour before beginning work. When contacted at the end of June, Cowan and the four doctors he oversees were in the process of performing bone marrow transplants on six children - a smaller than normal group.
Bone marrow transplants can be a lifesaving treatment for children who have certain types of cancer, such as leukemia and lymphoma, as well as diseases of the immune system, such as aplastic anemia, which occurs when bone marrow stops producing new blood cells, and inherited diseases of bone marrow, such as sickle cell anemia.
The goal of the transplant is to replace unhealthy or destroyed bone marrow stem cells with normal bone marrow cells from a donor. In the most basic cases, suction is used to remove marrow from the donor's pelvic bones along the lower back, while the donor is asleep under general anesthesia. The marrow is then injected into the bloodstream of the patient via an intravenous tube.
Before that can be done, however, high doses of chemotherapy and sometimes radiation are administered. This is done to suppress the patient's immune system so that the patient will not reject the new bone marrow and to make room in the bone marrow for the donor marrow stem cells to grow.
Cowan started the bone marrow transplantation program at UCSF in the early 1980s. It has grown since to become one of the biggest in Northern California.
"Along the way, he has been an innovator in both the methodology of transplantation and how children with bone marrow transplants are cared for," says Dr. Sam Hawgood, UCSF's chairman of pediatrics and physician-in-chief of Children's Hospital.
"He's very bright," says Andrew Gilman, director of pediatric bone marrow transplantation at the University of North Carolina. Gilman has collaborated with Cowan on clinical research.
"Frequently with people of his stature, ego tends to be the driving force. Mort is not like that," says Steve Yannone, a scientist with the Lawrence Berkeley National Laboratory, another of Cowan's research partners.
Need for donors
The biggest roadblock to performing more successful bone marrow transplants is the scarcity of appropriate donors. If the donor's blood is not a close genetic match, the host's immune system will perceive the blood as foreign matter and attack it.
Cowan has pioneered the use of a particular kind of bone marrow transplant that involves harvesting healthy bone marrow stem cells from the patient's own blood - eliminating the need for a donor.
"For children with a certain kind of cancer that is a particular advance," Hawgood says.
Cowan has also led the way in the use of bone marrow transplants for treatment of severe combined immune deficiency (SCID), a rare, inherited condition that leaves children with virtually no immune system.
In addition to being an accomplished clinician, Cowan has his own research lab at the hospital.
"He's a physician-scientist. He speaks both languages," Hawgood says. "So he can translate what he and others do in the lab into new treatments."
Helping Native Americans
One of Cowan's best-known achievements was identifying the gene that causes an unusually high percentage of the Athabascan-speaking Native American population to suffer from SCID. Now that the gene has been found, children with SCID can be identified in utero and transplants performed soon after birth, vastly increasing chances of survival.
And Cowan has bred a colony of mice with SCIDS for experimental purposes.
"We're just starting to work on gene therapy approaches to correct the defect," Cowan says.
Over the past 16 years, Cowan has performed more than 20 transplants on Navajo babies born in the American Southwest who suffered from SCID.
"Its invaluable," Dr. Jane Oski, a physician at the Navajo Area Indian Service hospital in Tuba City, Ariz., says of Cowan's work.
Cowan didn't set out to become a physician. He earned his undergraduate degree in electrical engineering at the Massachusetts Institute of Technology. He grew up in Cleveland, Ohio, where his father worked as a machine-tools maker and distributor.
A part-time job Cowan took when he was an undergraduate shifted his interest to medicine. A psychology professor who was studying the brains of rats hired Cowan to design a device that would test rats' powers of visual discrimination. The job included visits to Harvard Medical School to meet with the professor's collaborators.
"I think that really planted the seed in my mind of the possibility of doing medicine," Cowan says. "I think it was the lure of learning something and doing something that no one else had ever done before."
Came to UCSF in 1975
Cowan went on to get his medical degree at the University of Pennsylvania in Philadelphia. He became a pediatric resident at UCSF in 1975 and a year later bought the house in Kentfield, where he lives today.
It was Cowan's search for a way to treat children with SCIDS that moved him to develop UCSF's own bone marrow transplant program. Before that, he referred patients to hospitals on the East Coast.
"It was just not a good experience for us, or for the parents, or the patients. I was constantly getting phone calls from the parents saying how unhappy they were," Cowan says. "So we did our first transplant in 1982."
The transplants that Cowan and his team perform bring hope to children and their families. Nevertheless, Cowan's work has its dark side. The suffering of children is a daily fact of life for him.
Before the transplant is performed, his young patients must undergo several painful procedures - a bone marrow biopsy, a spinal tap and chemotherapy. While the long-term survival rate is 80 percent to 95 percent for children with genetic disease, it ranges from 30 percent to 70 percent for children with leukemia.
"There is a certain mortality that has to be accepted," Hawgood says. "It is quite wearing on the life of the doctors and the whole team."
Cowan is painfully aware of how rough the procedure can be on the children he treats.
"They've got to pass through hell sometimes," Cowan says. "We make them worse before they can get better.
"I don't go home every day feeling really great," he says. "But you focus on the successes. One thing you can tell yourself, 'Every kid that you save was going to die if you hadn't done the transplant.'"
Cowan's own children are grown now. His daughter, who is studying computer science at MIT, is getting married in September. His son runs adventure travel tours in South America.
Keeping in touch
Cowan says he takes a special pleasure in keeping tabs on the kids he has treated.
"What's the reward for doing this? Sure, it's to see a kid alive," he says." But it is also to see a kid go on. I let people know I'm not adverse to being invited to graduations and weddings."
In the rare free time that he has, Cowan unwinds with a hobby that harkens back to his father's occupation at a machine-tool maker. Cowan is building a scale model of a Hudson steam locomotive in his neighbor's back yard. He is fashioning all of the parts himself at a friend's machine shop in Corte Madera.
"I started that seven years ago. I spend a couple hours here and a couple hours there," Cowan says. "My goal is to fire it up this summer."
Richard Halstead can be reached at rhalstead@marinij.com.
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