Family Awaits a Rebirth of Hope

Ricky Reed turned 5 on Tuesday. But how many more birthdays he’ll live to celebrate may depend on whether he can receive a lifesaving bone marrow transplant from a brother or sister who is due to be born in five days.

Ricky has suffered from leukemia since he was 22 months old, and his parents, with the help of the National Marrow Donor Program, have searched the United States and Europe for a donor of bone marrow--the thick, almost granular substance within bone structure that manufactures the blood’s red and white cells.

In Ricky’s case, it’s the stuff that could save his life by providing him with the raw material necessary to replenish his body with healthy white blood cells. But no donors have been found yet who match Ricky’s exact blood and antigen types. Now his best bet for the future may rest with an unborn sibling whose due date is Monday.

While the chances of finding compatible bone marrow donors among unrelated people is 1 in 20,000--and the reality can be 1 in a million--the chance of a match between siblings is 1 in 4.

But little Ricky isn’t watching the odds.

“He’s more excited about having a baby sister than the fact that the baby may save his life,” Theresa Reed said Tuesday while her kindergartner son celebrated his birthday with Teenage Mutant Ninja Turtle swords, pajamas and posters.

She and her husband, Richard--a Navy hospital corpsman--live on the northern fringe of Camp Pendleton, near San Clemente.

“Ricky’s living as normal a life as possible. He doesn’t think about it (the leukemia) all the time, but he does know that he can die from it,” she said.

The Reeds thought they were getting close to finding a compatible donor when the national registry found five people in the United States--and two more in Europe--who showed on the first screening that they might match. But further testing eliminated them.

The couple’s other child, 2 1/2-year-old Ruben, didn’t match, either.

So, for years, Ricky has received a steady regimen of chemotherapy and radiation treatment as he roller-coasters between remissions and relapses. Now the leukemia has infected his spinal fluid and entered his brain, and the youngster undergoes regular spinal taps to relieve the pressure in his head.

“He knows something’s up when the headaches won’t go away. He knows he’s got cancer, but he doesn’t understand why , or why him , or the depth of it,” his mother said. “He’s constantly asking questions, and constantly learning.

“We’re not hiding anything from him. It’s not fair for a child to go through so much pain without knowing what he’s got. We don’t want him to be scared, but we talk to him about what he has, and that it can be fatal, and we talk about God, and how we accept the fact that there’s nothing we can do but be there for him and support him.”

But a wellspring of hope erupted nine months ago--coincidentally, at a low point in the family’s life, when Ricky was being treated for another infection that required he be taken off chemotherapy. With the lapse of that medication, his bone marrow cancer flared up, sending the family into depression.

At the same time, though, the Reeds learned Theresa was pregnant with her third child.

“It was like a miracle,” she said. “It’s the best we can hope for. We know the baby may not match Ricky--we’ve been let down before--and we won’t let our hopes go real high. But still. . . . “

The baby will be delivered at the Navy Hospital at Camp Pendleton, and the newborn will be typed for its human leukocyte antigens--the six particular components of blood that should match identically with the would-be recipient.

There are 210,000 potential donors registered with the National Marrow Donor Program--a number that virtually doubled in the past six months with increased awareness. But the critical antigens are somewhat linked to race and ethnicity, and only about 1.5% of the donors are Latino, like Ricky.

That’s why all the attention is focused, for now, on the new baby.

If the siblings prove compatible, doctors will wait as long as necessary--weeks, or maybe months-for Ricky’s leukemia to again go into remission. Then he and his new brother or sister will be flown to Seattle’s acclaimed Fred Hutchinson Cancer Research Center, the largest bone marrow transplant unit in the world, for the procedure.

While chemotherapy and radiation remain the primary treatments for leukemia, bone marrow transplants have grown in popularity in recent years--thanks largely to the growth of the donor list.

The use of children--even babies--as donors is increasing as well.

“The youngest donor I’m aware of was a 6-week-old baby, and the marrow transplantation was successful,” said Dr. Carl Lenarsky, medical director for the transplantation program at Childrens Hospital Los Angeles.

“Personally, I’ve done transplantations involving a baby 5 or 6 months old, and that was successful, too,” he said. “It’s technically feasible, and can be done.”

Given the time it will take for Ricky to re-enter remission, and for the newborn to be tested, the baby will likely be at least 6 weeks old before the transplant is done--assuming the two children match--he said.

Dr. Richard Kadota, director of bone marrow transplantations at Children’s Hospital of San Diego, said doctors prefer to wait until a baby is 6 months old, if not a year, before undertaking the procedure. “But you don’t always have the luxury of waiting that long,” he said.

In such procedures, the donor is put under a general anesthetic, and a needle is inserted into the center of the hip--the body’s largest bone. A tablespoon of marrow is withdrawn for every kilogram of the recipient’s body weight, then introduced into the recipient’s body by a catheter that leads directly to the heart, where it then is carried to the bones and settles.

The greatest risk to the recipient during the recovery time is infection; for the donor, it is the anesthesia itself.

Some medical ethicists question the use of babies as donors of bone marrow.

“The first issue is, is it right to impose risk on a child in order, solely, to benefit another person?” said Art Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, who specializes in the ethics of transplantation.

“The second issue is, who can give consent for the baby, since normally we presume parents can, but in these kinds of situations--donations between siblings--there may be a conflict of interest. Should there be a third party--an ethics committee, a guardian, a court or an advocate for the newborn child?” he said.

Psychologically, he said, the parents have to be braced for the possibility that the newborn child’s bone marrow won’t match the older child’s--and consider the baby a disappointment.

“The hidden issue is the strain on the parents who have a child who is dying, and are filled with joy because of the birth of a new child. That’s an incredible burden,” Caplan said.

Lenarsky agreed that ethicists have debated turning to babies as donors of bone marrow--but says he endorses the practice.

“The chance of doing overwhelming good outweighs the very slight risk to the baby,” he said. “And in situations like this, reasonable people believe a child would give his consent, if he could.”

Ricky Reed, meanwhile, is focusing on other matters. “I got a Ninja Turtle poster for my birthday!” he blurted. “And I’ve got a girlfriend.”

People interested in donating marrow can call the San Diego Blood Bank at 296-6393 or the National Marrow Donor Program at 1-800-654-1247.