Tuesday, March 27, 2012
Cord Blood Chronicles: Phoenix boy, 2, Faces Long Difficult Medical Road
Cord Blood Chronicles: Phoenix boy, 2, Faces Long Difficult Medical
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A little blond boy bounces with energy, playing and squealing like any normal toddler. He doesn't look sick, but this 2-year-old, northeast-Phoenix toddler hides a blood disease and is need of a bone-marrow transplant.
When Noah Swanson was diagnosed with myelodysplastic syndrome in November, his parents were given two options: find a bone-marrow match for Noah or pursue a cord-blood transplant.
"I was devastated," said Nancy Swanson, Noah's mom. "I just started bawling."
Childhood MDS is very rare, as the syndrome typically affects older men. MDS targets the blood, preventing Noah from creating mature blood cells, including white blood cells. He is highly susceptible to bacterial infections because he lacks the cells to fight them off. Noah will have to go through chemotherapy to kill his bone marrow before any transplant occurs.
"He's perfect on the outside. We just need to make him perfect on the inside," Nancy said.
No bone-marrow match has been found for Noah in the national and international registries. He likely will have to undergo a cord-blood transplant, which is the more-expensive, least-tested option and requires a longer stay in the hospital, Nancy said. A cord-blood transplant takes stem cells from an umbilical cord donated by a mother and puts those new cells into the patient.
Some sort of transplant probably will be needed in April, before Noah's MDS has the chance to develop into acute myeloid leukemia, cancer that starts inside bone marrow.
Noah's family, which includes an older sister, 5-year-old Sydney, has accepted that he will likely get a cord-blood transplant, but is trying to encourage people to register with Be The Match, a national marrow-donor program.
"We want to find a match for anyone who needs it," Nancy said. "We don't wish this on any other family."
Be The Match adds 60,000 members a month, but that isn't enough. Aubrie Vargas, an account executive with the donor program, said people often think donating bone marrow is a surgical procedure, but it a lot like donating plasma.
To be eligible to donate, people can register at bethematch.org. Interested donors can fill out their personal information online and a cheek-swab kit will be mailed to the house. The kit is returned once the swab is complete, and a new donor is added to the registry.
"We want to bring forward that people should register," said Scott Swanson, Noah's father. "If there's anything we can do for the community, it's this."
The Swansons also have teamed with the Children's Organ Transplant Association, or COTA, to raise money for Noah. A transplant will cost $350,000 to $500,000, which does not include co-pays for follow-up visits, medication, transportation costs or food.
The family has health insurance -- Nancy is in insurance sales and Scott is in information technology -- but not enough to cover all of the expenses. COTA and volunteers are trying to raise $50,000 through fundraisers for Noah. The money raised will go into a COTA account, designated for the toddler. If Noah needs any of the money from his account, COTA dispenses the funds.
"The fund will always be there for him throughout his life if some secondary illness comes along later in life," Nancy said.
In the meantime, Noah's family waits to find out which transplant the toddler will receive. If all goes well with the chemotherapy and the transplant, Noah's prognosis will be much improved.
"That is the encouraging thing," Scott said. "We always wanted that to be the outcome."
I hope the best for Noah and his journey ahead. Since no bone-marrow matches have been found, it is good to know that the Swanson's have an alternative option with an umbilical cord blood transplant. Finding any type of match whether it be an organ, bone-marrow, or even cord blood stem cells is difficult and that is why I think it is so important for parents to consider privately banking their baby's umbilical cord blood or in the very least publicly donate so another child may have the opportunity to find a match in their most desperate hours. Stem cells are saving lives everyday and with cord blood being one of the richest sources of stem cells, banking your child's cord blood at birth in my opinion is a no-brainer...........MrCordBlood