The Best Christmas Gift of All

For 3-year-old Steven Koss and his family, this year will be the most special of Christmases.

After more than a year battling aplastic anemia, Steven has found an anonymous bone marrow donor and perhaps a cure to the disease that has taken away his body’s ability to produce blood cells.

“It’s the best gift anyone could have ever given my son,” said Steven’s mother, Shannon Smith. “It’s the gift of life.”

This will be the last weekend Steven spends at his Thousand Oaks home for at least the next two months.

He will be admitted to UCLA’s Children’s Pediatric Care Center on Monday to begin a round of chemotherapy and radiation treatments to prepare his body for the transplant. He is scheduled to undergo the lifesaving marrow transplant Dec. 22, three years and six months since his birth.

Steven will then spend the next six to eight weeks in the hospital, where doctors will keep a close eye on his recuperation to make sure his body doesn’t reject the transplanted marrow.

“I’m so nervous I haven’t been able to sleep,” said Steven’s father, Scott Koss. “The doctors told us what all might go wrong, so this is all very stressful.

“I’m just hoping this works so Steven can be a normal little guy.”

Steven, described by his mother as adventurous with a penchant for frolicking in the grass and spending time in a sandbox his father built, was diagnosed with aplastic anemia in May 1996.

Since then, he has gone through several treatments to help boost his ability to produce the cells that oxygenate his body and platelets to help clot the cuts and scrapes common to boys his age.

Initial drug therapies produced encouraging results, but Steven soon relapsed, leaving a marrow transplant as the only option.

Because of the high risk of infection, Steven has spent much of the past few months inside his home, looking out closed windows at what other kids his age were doing.

Genetic tests on his mother, father and 6-month-old sister Serena revealed they were not acceptable matches and that the family would have to turn to the National Bone Marrow Registry.

“That was discouraging,” Smith said, remembering how slim the odds were of finding a suitable donor outside the family. “But I just felt it was part of God’s plan and that Steven would someday get better.”

And it didn’t take long.

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On Dec. 4, just three days after doctors told the Koss family that none of their marrow types matched Steven’s, they received a call from the National Marrow Donor Program saying that it had located three individuals who matched Steven’s marrow, one of whom was willing to undergo the procedure during the holidays.

“I had mixed emotions when I heard the news,” Smith said. “I want my son to be healthy, but there’s also the risk of us going in there with him and him not coming out.

“But I know he needs this and the doctors are great, so I’m confident that everything will work out fine.”

Bone marrow transplants have become a rather routine procedure since first being pioneered in the 1960s.

According to Dr. Neena Kapoor, clinical director for bone marrow transplants at Childrens Hospital in Los Angeles, transplants in children often produce the most successful results.

“Children that age are very resilient and often recover very quickly from the transplant,” she said. “I’ve seen cases where the kids are up and running around after about an hour. Sometimes we can hardly keep them in the hospital.”

The procedure generally takes anywhere from half an hour to two hours to harvest the marrow--a soft, spongy tissue found at the center of bones--from the donor, which is then transplanted into the patient through an intravenous drip.

Complications from the transplant are usually caused by the recipient’s body rejecting the transplanted marrow, but Kapoor said that is easily managed by drugs.

While the procedure has a nasty reputation for being very painful, Kapoor said that isn’t the case. Depending on the amount of marrow needed, donors are put under local anesthesia. A long needle is then inserted into the hip bone and the marrow is extracted.

Donors usually experience a few days of soreness and their marrow regenerates within a few weeks.

“It’s definitely not as bad as everyone thinks it is,” Kapoor said. “And besides, it saves lives.”

Although Steven will be spending Christmas in a hospital recuperating from the transplant, he won’t be missing out on any gifts.

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He’ll be unwrapping a bounty of treasures including some videos, games and even a package of glow-in-the-dark stars. “We thought that since he can’t be outside for a little while, we’d bring the outside to him,” Smith said.

But she said those presents pale to what some unnamed individual has given them.

“I don’t think Christmas will ever be the same for us,” she said. “It’s more than just decorations, gifts and trees. It’s about life and love.”