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A future of promise and
uncertainty
Monday, October 20, 2003
BY BOB BRAUN
Star-Ledger Staff
She is fragile. She is tough.
She breaks your heart with a sad little smile -- and erases a wiseguy's
smirk with a nuclear stare and an in-your-face comeback line. This all comes
from fighting for her life. From fighting cancer.
"I really don't think of the future," says Nicole Gioia. "That's just too
scary."
What Nicole really means is that she doesn't think about dying because
that's something 12-year-olds should never have to consider.
She does think about the future.
About how she'll go away to college, for example. Nicole teases her parents
about how she expects to listen to the messages on her dorm room voice mail
only to hear them reminding her to take her meds and drink her fluids, both
necessary for her survival.
"Yeah," says Denise, her mother. "That's me -- I'm the fluid Nazi."
Banter and teasing are part of how the Gioia family copes with Nicole's
especially persistent case of Hodgkin's lymphoma, a cancer often susceptible
to treatment.
Not in Nicole's case. She is in remission now, the third time since she was
diagnosed in September 2001. She became ill Sept. 11.
A year ago, she endured a risky and debilitating -- but frequently
successful -- transplant of her own bone marrow cells, a procedure that took
three months for recuperation. It put her in remission, but only for a few
months.
"You don't know if it will come back," says Nicole, who also underwent
surgery to remove a tumor last spring and now receives chemotherapy twice
monthly. "There might be one more resistant cell left, hiding behind the
scar tissue and you can't see it."
The seventh-grader is conversant about cancers and medications and platelets
and T cells and transplants. Things most preteens shouldn't need to know.
"She explains things to us," says her father, Rick, a district manager for
P.C. Richard & Son.
"And, no, I don't want to be a doctor -- I don't want to go anywhere near a
hospital," says Nicole, who does have to go to the hospital, Sloan-Kettering
in New York, not just for chemotherapy, but for constant monitoring, tests,
two or three days a week.
She does that, but she's also an honor student at George Washington School
in Wayne. She plays softball and basketball and takes dancing, piano and
drum lessons.
"Nicole's not letting the cancer beat her," says her mother.
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Doesn't beat her, but it
beats her up. The chemo nauseates and weakens her. Nicole often feels achy.
She's lost her hair -- again.
This can get her down, especially when other kids in the mall stare -- "Hey,
take a picture, it'll last longer," she retorts -- or when one says, "Hey,
you a girl or a boy?"
"Then, I'll say -- 'Take a good look.'" Yup -- no question.
Her parents reciprocate by doing everything they can. When Rick's insurance
wouldn't pay for Sloan-Kettering, he took her there anyway -- and their home
was saved from foreclosure only by $71,000 from the state's catastrophic
illness fund for children.
Rick sponsored a drive to find donors who might provide a bone marrow
transplant that could save Nicole's life. Her tissue type doesn't match
anyone in her family -- including her own 14-year-old brother, Anthony --
and no one among the nearly 60,000 people who donated samples to a worldwide
registry.
"The more people who are tested," says Denise, "the more children could be
saved. Every time we go to the hospital, we talk to more parents who are
hoping to find someone with a match."
Rick put up a Web site that explains how anyone interested in becoming a
possible donor could register -- www.nicolegioia.org.
"She's in remission now and we're very grateful," says Rick. "But we know
she could be cured with the right transplant. We'll do whatever we can to
find that match."
Until that happens, her best hope for remaining in remission is continued
chemotherapy. That means spending nine hours at the hospital, then coming
home nauseated and weak -- a condition that lasts about 48 hours.
"I get up the next morning and I'm so sick," says Nicole.
But then she insists on going to school.
"I don't want to miss any more. I've missed enough."
Bob Braun's columns appear Monday and Wednesday. He can be reached at
rjbraun@webspan.net or (973)
392-4281.
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