Carly Rose Nieves will be turning 16 in January, but in lieu of a lavish Super Sweet 16 party most girls her age plan for years, she is putting all her efforts into saving lives.
The Middle Village teen has been battling Acute Lymphoblastic Leukemia (ALL) — a cancer of the white blood cells that normally fight infections — since she was seven.
Carly received blood transfusions and underwent two years of intensive chemotherapy. Then at age 12, she suffered a relapse of ALL after three years. The relapse placed Carly in the high-risk category, which requires additional intensive, high-dose chemotherapy.
Because of her intensive treatment, Carly — who adores school and managed to graduate as an honor roll student in the 6th grade — had to miss many years of it.
Now Carly — who regrew a full head of hair following the chemo — is out of treatment and in remission. And after being out of school for three years, Carly is back as a freshman at Christ the King (CTK) Regional High School and she is “loving every minute of it.”
“She’s doing awesome,” said her mother, Lisa. “She’s still very tired and weak, but that’s expected for the first year or so. But she manages every morning to get up and go to school. It’s just been a great experience for her because she can socialize now that she has an immune system.”
Now at school, Carly has a great following of friends and administrators who understand.
“There are kids that remember her from last year because she did a speech at their Thanksgiving Mass,” Lisa said. “All the kids in her classes, teachers, everyone at the school — they all seem to get along great. She has good and bad days because of the chemo, but the teachers really understand.”
Still, Carly has not forgotten the friends she made in the hospital and others that are still suffering, including one friend — of Italian and Chinese descent — who relapsed for the second time and has a hard time finding a bone marrow donor match because of her ethnicity.
That’s why Carly, her friends and family are holding another community blood and bone marrow drive for the second year in a row at Christ the King, and they need as many people as possible to donate on December 17 from 9 a.m. to 3 p.m.
Those of Asian descent are particularly needed to match Carly’s friend, Lisa said.
“We need to find the positive in all of this, and this is the only way we could think of to try and help as many people as we can. It truly does save a life,” Lisa said, adding that one bag of blood can save three lives.
Last year, they collected 200 pints of blood, registered 54 people to be bone marrow donors and raised $3,000 for Friends of Karen — an organization that supports critically ill children and their families.
This year, they will have a few small raffles to continue raising money for Friends of Karen. Prizes include gift baskets and toy prizes that were donated, including a tricycle and a wooden fire engine.
But mainly, Lisa said, she wants to spread awareness about how important and easy it is to register and donate.
“Carly needed a lot of transfusions during her treatment. The last thing you ever want to hear as a patient or a parent is ‘We ran out.’ That happened to us once. It’s just very scary,” Lisa said. “You can save a life and a family’s life. It’s amazing what can be done from just swabbing your cheeks.”
Lisa explained that cancer patients may require frequent blood transfusions because aggressive treatment often destroys healthy blood cells along with diseased ones. Red blood cell transfusions to fight anemia and platelet transfusions to control bleeding are often needed.
“Carly keeps that in mind all the time,” she said. “She tries to get everyone to be aware. We just want to tell people how easy it is to give the gift of life. What better time of year to do it than the holiday season? It’s better than giving money.”
For more information about becoming a marrow donor, call 1-800-MARROW-2. It’s a simple process that takes just a few minutes of paperwork and a cheek swab.
To learn more about Friends of Karen, go to www.friendsofkaren.org.
And to find out more about the blood drive, on Saturday, December 17 at Christ the King, 68-02 Metropolitan Avenue in Middle Village, email lhorner67@gmail.com.