Last chance for a match
Bone-marrow donors slower to step forward because of testing fees
Last Friday, Lori Burrows was told her son might have three months to live. Doctors said that after months of searching the registry of 5 million bone marrow donors worldwide, they found no suitable match for Jeremy's type of aggressive cancer because of his rare DNA type.
'We were all quite upset for several days about that,' said Burrows, a perennially optimistic woman who works as a saleswoman for the Greenlight Classifieds for Pamplin Media Group, which owns the Portland Tribune. 'You just take the good days and try not to dwell on the bad.'
Since her 20-year-old son, who uses the nickname 'JB,' was diagnosed in October 2004 with an aggressive cancer of the blood called non-Hodgkins T-cell lymphoma, she's been on a crusade. She's kept a long-running blog with frequent updates on JB's condition and organized community garage sales and other fundraisers to help pay for the family's expenses not covered by insurance.
With several months' extensive chemotherapy and radiation, JB's tumor went away. Then it reappeared in April 2005; now it is in its final stage. Doctors say the only hope for survival is a bone marrow transplant.
Burrows' main goal now is to spread awareness of the need for bone marrow donors. The more she investigated the process, the more upset she was to discover that there is a fee for potential donors, which might deter many from participating, she said.
It costs $52 to join the registry of the National Marrow Donor Program database, which covers the cost of testing a person's tissue type through blood or a sample of cheek cells. Minorities, however, can register for free because there is such a short supply of their marrow in the worldwide registry.
The American Red Cross' human leukocyte antigen lab in Portland charges potential donors $85 to determine if they are a match for a family member in need, and hundreds of dollars more for additional testing if the initial screening results in a match.
'I feel there would be more donors if the cost were not so high,' said Burrows, who lives in Newberg with her son. 'A lot of people I know have big hearts and want to help, but can't afford to.'
Patient advocates feel the same. 'It's very difficult to find matches through the National Marrow Donor Program database,' said Sue Sumpter, patient services manager for the Leukemia and Lymphoma Society in Oregon. 'There's a one-in-four chance to find a donor from a sibling. … We do absolutely need more people to sign up to be marrow donors. One way would be to find additional funding so the fees would be covered.'
Burrows' insurance already had paid $150 to test her other son, 22-year-old Nick, to see if his bone marrow matched JB's. It didn't. Doctors said JB's DNA type is so rare, it wasn't worth testing any other family members or even holding a bone marrow drive in the community - that the best hope was to look internationally.
With no matches so far, doctors will continue to search for one but in the meantime will perform a transplant using JB's own healthy bone marrow by collecting his stem cells, freezing them, storing them and then transplanting them back to him after he gets high doses of chemotherapy and radiation to destroy as much of the tumor as possible.
'He's got a really difficult cancer to treat,' said Dr. Suman Malempati, JB's doctor at Doernbecher Children's Hospital. 'We think this gives him a reasonable chance. But it's a chance. It's not an absolute treatment.'
Malempati said JB's prognosis for after the transplant is uncertain. 'It's more likely (the cancer) will come back than it won't, even with the transplant,' he said. 'If it comes back again, I don't think we'll be able to cure it. … But for each person, it's either you will (survive) or you won't.'
Donating doesn't hurt
Dr. Eneida Nemecek, the pediatric stem cell transplant director at Doernbecher, said the fees probably do discourage people from becoming donors. But studies have shown that the biggest deterrent is actually fear of what they perceive to be a painful process.
The process actually is not scary but simple, she said. Potential donors must be in basic good health, get about two teaspoons of blood drawn to start, and be willing to be placed on a registry and do further testing if a match is needed. In fact the process was so simple that until January 2005, the Red Cross allowed people to donate bone marrow at the same time that they donated blood.
But when new regulations for bone marrow transplants came online, the Red Cross decided to drop that part of its operation and refer people who inquired about donating bone marrow to the National Marrow Donor Program. The Red Cross also decided to refocus its mission on blood donations, rather than bone marrow, cord blood and tissue donations, a spokesman said.
When asked about their fees, both the National Marrow Donor Program and Red Cross said there are ways people can reduce or get around the fees.
Businesses often offer matching grants; families and communities hold fundraisers and bone marrow drives; and there is financial aid available from the Leukemia and Lymphoma Society.
The organization will cover $500 in testing fees for anyone who wants to determine if he or she is a bone marrow match for a family member.
Nemecek said the time-consuming process of testing, or 'typing,' a person's DNA actually is several thousand dollars, using complicated technology and expensive machinery. The $52 cost is actually a reduced fee, she said.
Burrows hadn't held a community bone marrow drive for her son because doctors thought his DNA was too rare to find locally. Even so, Burrows said, she has started writing letters to local businesses to ask if they can help sponsor other children in need at Doernbecher.
'It's sad to see all the little kids there,' she said.
There's still time for sports
On the outside, the only sign of JB's cancer is his bald head, a result of his chemotherapy. He doesn't act like he's sick, either. Besides being more tired than usual, he has none of the symptoms he used to have: headaches, chest pain, difficulty breathing and infections through his entire body.
He's a big believer in his faith, as a youth leader and member of the Newberg First Baptist Church. When asked about his feelings toward death, he said: 'I guess we have to let God be in control of that. He hasn't let me down so far.'
One of the biggest challenges for JB, during his sickness, has been to lay low when he's feeling all right but his white blood cell count is low and he's susceptible to infection. He joked that after the six-hour transplant process, during his month in the hospital and six months of recovery time when he will mostly stay home to avoid infection, he will have to learn some new card games besides spades and hearts.
He is a big fan of extreme sports, hoping to sky-dive sometime and waiting for the day he can get back to skiing, snowboarding and dirt biking.
He did, however, get the OK to go to Queenstown, New Zealand, last fall, where he and his girlfriend went bungee jumping off a bridge over whitewater rapids - one of his lifelong dreams.
He also got his doctor's OK on Monday - three days before he was set to start the transplant process by getting his stem cells collected - to go wakeboarding on the Willamette River.
'It probably takes more than I have right now, but it doesn't stop me from trying,' JB said. 'There's always something more you can be doing with it. You learn one trick and go on to another one.'
Visit the Burrows' Web site - www.jbfightscancer.upcsites.com - or visit www.marrow.org for more information.