After half a year of blood transfusions to treat life-threatening anemia, 9-year-old Ricky Martinez was running out of time.
Then another option appeared —- doctors found Ricky’s own blood from his umbilical cord, banked at birth, and stored in a medical facility.
“I had donated it at birth, when I delivered,” said Ricky’s mother, Cynthia Martinez. “I had no idea that I’d be using it for him nine years later.”
The cord blood discovery represents a “godsend” for the family, Martinez said, because Ricky’s body began rejecting the transfusions that keep him alive.
Cord blood contains stem cells —- undifferentiated cells that can spur production of healthy tissue to help treat various diseases. Doctors believe it could jump-start Ricky’s bone marrow, allowing his body to resume normal blood production.
But it’s not a guarantee.
Ricky’s condition, aplastic anemia, is an extremely rare disease, and cord blood transplantation is an experimental procedure for the condition, said David Buchbinder, a hematologist and transplant physician who is treating Ricky at Children’s Hospital Orange County, in the city of Orange.
Although the procedure offers few risks of complications, it also pushes the boundaries of medical practice, placing Ricky in a realm of mixed medical opinions and uncertain results, Buchbinder said.
His parents say they’re willing to go there to save their son’s life.
“His match is the best chance of survival,” said Ricky’s father, Oscar Martinez. “The doctors have told us it’s not a cure —- it doesn’t mean he’s going to defeat it. But it’s our only hope, and it’s his best chance.”
The first signs of trouble appeared last summer, when Ricky developed large bruises on his legs, skin eruptions on his chest and nightly nosebleeds, Cynthia Martinez said.
After a particularly severe nosebleed that lasted hours, she took Ricky to the hospital, where tests showed her son had low counts of platelets —- blood cells involved in clotting.
He was diagnosed with aplastic anemia, a condition in which the bone marrow ceases to make blood cells as the body’s immune system turns against itself.
“There’s some sort of insult, whether it’s a virus, that trips your immune system, so that it attacks your own body and empties your bone marrow,” Buchbinder said.
The bright-eyed boy, who loves his guitar and the Los Angeles Lakers, became a regular at the hospital, receiving weekly transfusions to replace the blood his body couldn’t produce.
His mother said Ricky has braved his illness cheerfully.
“The whole entire time, he’s been such a strong, amazing boy throughout this whole ordeal,” Cynthia Martinez said. “He’s had his spirits up and is always smiling.”
Awaiting a donor
While shuttling their son to doctor visits, his parents began preparing for the next step. Aplastic anemia sometimes resolves with treatment, but Ricky’s condition showed no sign of stabilizing. And the transfusions were a temporary fix.
For long-term remission or a cure, he would need a marrow transplant, in which doctors extract marrow from a donor’s blood or bone, then transplant it to the patient in order to restore healthy marrow.
For months, the family had conducted more than 20 bone marrow drives at parks, schools, shopping centers and churches in Southwest Riverside County, and in Escondido, where they originally lived.
Students at Cal State San Marcos chipped in, as well, launching a campuswide marrow drive in lieu of a final exam for instructor Scott Landau’s fall entrepreneurship class.
Together, the Martinez family and students registered 1,509 qualified donors in honor of Ricky, according to Be The Match, the national marrow donor registry.
Meanwhile, hospital workers were scanning donor rolls, and they located one potential donor for Ricky who matched most, but not all, of his biochemical markers. They were also surprised to find a cord blood sample that was a perfect match.
As hospital workers researched it, they discovered it was Ricky’s own cord blood, banked at the time of his birth, Buchbinder said.
“The whole thing is wonderful but strange,” Buchbinder said. “This is truly an amazing gift that we have this cord.”
Cord blood banking is an infrequent procedure, limited to parents who can afford the fee to store their child’s cord blood, or to those, such as Cynthia Martinez, who donate it for research. And aplastic anemia itself is an uncommon disease.
Because of that, Buchbinder said, there’s little medical literature on the procedure they plan for Ricky.
“We don’t typically use cord blood as a stem cell source —- it’s used for other diseases, like leukemia,” he said. “Not that many people bank their own cords. The fact that this was donated, and the fact that it’s still there, and Ricky happens to need it, is pretty amazing.”
Because there are few cases on record, experts are divided on whether using cord blood is a viable treatment for aplastic anemia.
The disease can result from a shock to the system or from a hereditary condition, Buchbinder said. In the latter case, transplanting the patient’s own cord blood would simply reintroduce the problem cells.
After extensive testing, however, Buchbinder said Ricky’s doctors have found nothing to suggest he was born with the disease, leaving the cord blood option open.
“This was truly what we would call an acquired aplastic anemia,” he said. “Somehow, Ricky got something that triggered his immune system” to attack his marrow.
Despite the uncertainties, using a patient’s cord blood confers some advantages over donated marrow. There’s no risk that Ricky’s body will reject his own cord blood cells, or that he will develop “graft-versus-host” disease, in which transplanted cells attack the recipient, Buchbinder said.
“Those cells are Ricky’s, so they will be happy inside of Ricky,” Buchbinder said. “There is no risk to using it, other than the fact that we are going to give him immunosuppressive drugs beforehand.”
Preparing for transplant
On Monday, Ricky will be admitted to Children’s Hospital Orange County, where doctors will begin prepping him for the procedure, delivering strong chemotherapeutic agents to wipe out his immune system and make way for his cord blood cells.
If that goes as planned, they will perform the transplant about a week later.
“They want his stem cells to take over in his own body and have a party and say ‘Yay, we’re home!'” Cynthia Martinez said.
Buchbinder said doctors will know about a month later how well the cord blood transplant worked. Martinez said the family is preparing for a three-month hospital stay while Ricky recuperates.
Last week, Ricky met actress Zendaya Coleman, from the Disney Channel show “Shake It Up!” at Disney’s studio in Burbank, through the Make-A-Wish Foundation.
The two shared Xbox games and a pair of friendship bracelets, his mother said, and Coleman tweeted about the meeting, helping Ricky gain an instant following on Twitter.
Before he enters the hospital, his family will take him on a long-awaited outing to ride go-karts this weekend, Martinez said.
Although he has stayed upbeat throughout his illness, Martinez said that he awoke from a recent procedure and confided his fear and fatigue, as well as his resolve.
“He said, ‘I’m going to fight this disease, and I’m going to beat it, Mommy,'” she said.
Ricky’s parents say they will continue to recruit bone marrow donors regardless of the results, knowing that the cord blood transplant may not be a permanent cure.
“It’s just a waiting game for this transplant, to see if the cells can grow on their own,” Cynthia Martinez said. “He can be in remission, but we don’t know for how long. I don’t think we’ll ever know. We’ll just have to leave it in God’s hands, and be grateful for every day we do have with Ricky.”
Source: Deborah Sullivan Brennan, nctimes.com