Freckle-faced Brandyn Orr thinks a lot about his future. At age 12, he would like to be a computer programmer, or a repairman, or maybe even an artist. While his three younger brothers defy gravity on the trampoline at the family’s Mesa home, Brandyn sits at an old picnic table in the front yard, rattling off all the things he knows about fixing cars and patching up homes.
He helps his mom, Susan, around the house by installing a ceiling fan and fixing the family’s VCR. The oldest of four boys, he’s the man of the house since his parents divorced a few years ago.
“It’s not hard,” he says. “What I really want to do is build a house for us someday.”
“He’s got a lot of big dreams,” says Susan Orr, ruffling her son’s sandy blond hair.
While Brandyn’s eyes are set on the future, Susan remembers when she almost lost him — twice.
It was a few days after Brandyn’s second birthday, and he’d been feverish for several days. Susan and her then-husband, Bob, took him to the ER.
“It seemed like he was sick a lot when he was real little,” says Susan. “But I guess you just always hope it’s nothing serious.”
The doctors diagnosed Brandyn as having an ear infection and sent him home. A few weeks later, he was back in the ER, where doctors now said he had pneumonia. They took X-rays and suggested blood work to rule out a bacterial infection.
The diagnosis was not what any parent wants to hear.
“The doctor came into the room and was talking about leukemia,” says Susan, “asking us if we had a support system, and saying all kinds of things we didn’t understand. It was all like a dream.”
Susan was six months pregnant with her second son, Kaelyn, and an oncologist asked her if she had considered saving the baby’s umbilical cord blood in case Brandyn needed it.
“We had never heard of cord blood before, but the doctor said it might help Brandyn, so we said, ‘Yeah, sure.’ ” she says. “It was expensive, but given the situation, we didn’t really even think about the cost.”
RICH IN STEM CELLS
Also known as “placental blood,” cord blood is what remains in the umbilical cord and placenta after a women gives birth and the cord is cut. The blood is rich in stem cells, which have the ability to develop into many different kinds of cells.
It’s been used to regenerate blood and immune cells after chemotherapy and to treat blood disorders. Scientists and doctors also believe they may be able to generate human tissue and organs from the cells.
The first cord-blood transplant was done in 1988, and since then hundreds of Americans have received cord-blood transplants, either from private stores or from a public bank. But unless there is a blood disorder or cancer in your family, it may come as news that there is anything to do with the umbilical cord other than to tie it into a bellybutton, clip off the excess and throw it away. But with more research being done into the potential for the stem cell-rich umbilical cord, and with more legislation being debated about the subject, it is likely you will be hearing more about saving cord blood for the future.
The Orrs signed on with a private cord-blood bank after Brandyn’s diagnosis — Cord Blood Registry, the nation’s biggest private cord-blood banking company.
The doctor told the family that it was more likely a sibling would be a match for Brandyn than it was that they would find a match by going through the National Marrow Donor Program, which is also the database for bone-marrow donors.
They signed paperwork, paid the $1,000 upfront fee, and received the collection kit, which included syringes and instructions, which they gave to their physician.
Then they waited.
Brandyn continued with his chemotherapy and after three long years of treatment, the cancer went into remission. The Orrs believed they would not have to use the cord blood after all.
Susan had two more boys in the next few years and everything seemed normal. But she never forgot Brandyn’s illness, and so she had Devyn and Jadyn’s cord blood banked, too.
And then her worst fear came true.
The family was vacationing in Florida and Brandyn started complaining to his parents about feeling tired and sore.
“He was a little bruised, but he was 6, so that was pretty normal,” says Susan. “I didn’t think anything of it at the time. Then, the boys were at the playground one day, and he fell down and he couldn’t get up.”
They rushed Brandyn to a clinic where they were told his leukemia probably had returned. The family went home immediately, where the diagnosis was confirmed. Brandyn was hospitalized that night.
“The doctors and the nurses kept coming into his room, saying how sorry they were,” says Susan. “It was like there was no hope. It was the most horrible thing. I kept waiting to wake up from the nightmare.”
This time, Brandyn needed a transplant and he didn’t have time to wait for a donor. The family had Kaelyn’s banked blood from four years ago, but to the Orrs’ disappointment, it was not a match. They asked that the blood from their third-born child, Devyn, be tested. Then they waited 10 nail-biting days for the results.
“I was sitting at the kitchen table, just thinking about it, when they called and, thank God, it was a match,” says Susan. “It was such a miracle.”
By then, Susan and Bob had divorced, so Susan prepared for the transplant. It meant taking a year-long leave from her job at FedEx and moving with four little boys to Tucson, the only place in Arizona where cord-blood transplants are performed. Her mother joined them to help take care of the boys.
Susan and the younger boys stayed in an apartment near University Medical Center, while 6-year-old Brandyn endured weeks of intense radiation and chemotherapy treatments to his neck and spine.
There wasn’t much to do at the hospital, so Susan bought a Ninetendo and some games to help Brandyn pass the time.
“I used to play Dr. Mario,” says Brandyn. “I would kill all the germs.”
“He was throwing up all the time,” says Susan. “He would throw up and then just keep on playing, it was so normal to him to be sick.”
A SIMPLE PROCEDURE
Susan says she was surprised at how simple the actual transplant was. Over a period of a five minutes, a syringe containing the cells was pushed into an intravenous tube, and then it was done.
Brandyn stayed in the hospital for five weeks after the transplant, and for months returned daily for checkups and follow-up treatment. He wore a mask anytime he wasn’t within the sterile walls of the hospital, because his immune system was nearly annihilated by his treatment.
“Through it all, he never complained, or cried,” says Susan. “I knew he was in so much pain. When he first started his radiation treatments, I went out one day when he was on the swing set and sat next to him and told him that it was going to hurt, but that he had to do it so he could get better. He never fussed after that, even when he had to have the spinal taps, even when they had to put the ports into his chest.”
Doctors say although Brandyn’s treatment was physically and emotionally taxing on him, a bone-marrow transplant would have been more risky.
A cord-blood transplant differs from a bone-marrow transplant because it poses no threat to the donor. In the case of cord blood, neither the mother nor child is at risk because the blood is collected from the umbilical cord after it is clamped off.
With bone-marrow donations, there is generally anesthesia given while marrow is withdrawn from the large crest of the hip bone. Transplants are complex and risky.
“There’s no pain in collection of the stem cells (from cord blood),” says Dr. David T. Harris, an associate professor at the University of Arizona and the scientific director of the labs at Cord Blood Registry. “There’s fewer side effects after the transplant with equivalent survival rates.”
Due to the potential for the stem cells contained in cord blood, legislators have jumped on the cord-blood wagon, touting it as a controversy-free alternative to embryonic stemcell research.
In December, President Bush signed legislation establishing a national umbilical cord-blood program and providing federal funding to collect and store cord blood.
Gov. Janet Napolitano signed a bill Wednesday that requires obstetricians provide information to pregnant women about cord-blood banking beginning in January. It also requires the Arizona Department of Health to develop an informational brochure about the options to discard, privately bank or donate cord blood.
Other states have passed, or are talking about, similar legislation.
Harris says the legislation is an important step for Arizona. “It educates families about a once-in-a-lifetime opportunity to collect stem cells that not only can be used for transplant, but also appear to be equivalent to embryonic stem cells for use in regenerative medicine.”
He says even with the national donor program, fewer samples will be collected than are needed, particularly to treat minorities.
Susan Orr is glad Arizona has enacted the law. While in Tucson, she met families that were waiting, hoping, praying, to find a match so that one of their loved ones could have the same procedure as Brandyn.
“We were so lucky,” she says. “I don’t think enough people know, when they’re pregnant, that the cord blood has the potential to save someone’s life. Even if they don’t need it, there’s someone waiting, who might die, who does.”
Brandyn remains healthy. Next year he will be cancerfree for six years, the milestone when most people are considered safely out of the realm of relapse. He barely remembers why his pale chest and stomach are marked with ragged white scars.
Like lots of kids, he enjoys summer camp, hanging out with his best friend Leonard and his brothers, and fixing cars and gadgets.
He doesn’t say much about his past with leukemia other than that he’s glad it’s over and he can go on dreaming about his future.