Niva Louissaint, the 18-year-old not-girlie-girl doing lunges in her “Nap Queen” T-shirt, is trying to rebuild her balance now that her left leg is gone and a 10-pound metal and plastic prosthetic has taken its place.
She lost her leg more than a year ago, but she’s getting around to the rehab therapy only now because the year has been packed with so many other disasters. Niva lists them with little more than a shrug:
Six months of chemo on both lungs. (The cancer they found on her left shin moved north.)
Surgery on both lungs.
Two months of recovery only to have a CAT scan reveal that some tumors remained.
When not battling the metastasized cancer, her body is also grappling with sickle cell anemia, a blood disorder that damages her red blood cells and cripples their ability to carry oxygen.
As a therapist puts her through the paces, it’s not clear which is tanking Niva’s energy most: that cumbersome prosthetic, her compromised lungs or her handicapped blood cells. But the teen marches on, Adele’s “Someone Like You” piping through her lifeline — the earbuds to her cracked cellphone.
Less than 24 hours later, she would be knocked even lower: a scan reveals what appears to be more cancer growing in one lung. More surgery is ahead.
“I did not get the good news I was hoping for,” Niva concedes. And more immediately, her doctor is concerned about something else in her lungs — a possible blood clot.
That a teenager with such determination is suffering so much at the hands of her own body is infuriating to all who know Niva. But the assaults don’t end there.
As Niva puts it, “I was born into a family of sick but really strong people.”
Everyone in her home has sickle cell, and its wrath has been sweeping.
Niva’s mom’s kidneys are failing. Fifty-one-year-old Kesna Louissaint needs dialysis three days a week and a transplant in the long run.
Niva’s brother, Stanley, had a stroke when he was 8 after which his body threw the brakes on growing. He’s now 15 but with the stature of a boy closer to 10. He requires monthly blood transfusions for the sickle cell and does his studies from home to avoid the bullying his diminutive size attracted at school.
In June 2017, on the day that Niva had her leg removed from the knee down at Miami Children’s Hospital, her mom and Stanley were in St. Mary’s Medical Center in West Palm Beach. Mom’s kidneys were in a downward spiral. Stanley was battling a fever and infection.
Niva’s dad, Louicene Louissaint, 51, and her older brother, Kerlens, 22, spent that week shuttling from one hospital to the other and caring for the family’s youngest, 5-year-old Bradley.
The family, parents with roots in Haiti but a home west of Boynton Beach, don’t discuss Niva’s prognosis easily, but the cancer she has is unusually rare and aggressive. It is found in the lining of the nerves that extend from the spinal cord into the body. And when it spreads to other organs, it is a cancer that few survive — of those whose cancer metastasized, only about 8 percent are alive 10 years later.
Niva is focused on the here and now.
Despite being a full-time Santaluces High student with four afternoons a week dedicated to physical therapy and many days spent in doctors’ offices, Niva would like to pursue photography. The first step may be as simple as a phone without cracks. Her passion ignited when she and her visiting half-sisters challenged the brothers to a photo shootout — Niva won.
“You have to find the right moment and composition,” she says with authority.
Niva wants to go to prom and is eager for graduation, though concerned about the price of the cap and gown. Her other hobbies: watching anime with her brothers and collecting sneakers.
High tops. Low-riders. Bright reds. Blacks. Nike. Vans. She loves them all. Well, all but Converse — too hard to slip on. (And to be honest, this hobby has gotten trickier with the prosthetic leg and foot. Wrangling the shoe onto the prosthetic is a time-consuming affair that she does the night before.)
She’s managing worries few girls her age face: Will my jeans fit over this prosthetic? How soon can I get home and take this thing off? Where do I store my walker in a room that barely fits my bed and a dresser?
Still, Niva is pure teen in other respects. Her illnesses sidelined her before she could take a driver’s ed class and get her license. Now, Niva’s ready to get behind the wheel.
These days Niva is wearing her convictions. Where her left leg once held her up, her prosthetic is adorned with a yellow ribbon sticker with the words Isaiah 41:10 printed on it. The Scripture is internalized: “Do not fear, for I am with you; do not be afraid, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
And when she needs a boost of courage, she turns to her father, who presses through his own ailments to support his family. Louicene Louissaint works as a 10-hour day as a garbage collector in Lake Worth, before becoming the family chauffeur in the afternoons, ferrying wife and children to their never-ending appointments. One November week, the stops included a CAT scan for Niva, an MRI for Stanley and dialysis for his wife.
These days, he’s had to borrow a car. His Nissan Pathway has no transmission, no air conditioning and tape for a rear window. It sits out of commission in the driveway.
Despite his tireless efforts, Louissaint’s salary and the disability checks for his wife are not keeping pace with their mounting bills.
A girl whose birthday falls on Thanksgiving Day every so many years, Niva wants to see her family lifted this holiday season as they have lifted her — particularly her dad.
“He has encouraged me to not only stand again but to stand up for what I believe in,” she says. “To work hard for what I want, and to help others — he goes out of his way for all of us, every day.”
Niva Louissaint lost her leg more than a year ago due to an unusually rare and aggressive cancer that’s found in the lining of nerves. The cancer discovered on her shin has spread into her lungs. The Santaluces High student spends her time between school, therapy appointments and medical treatments — all with the help of her parents, who battle serious ailments of their own. The family needs a reliable car, assistance with household bills, a big-boy bed for Niva’s 5-year-old brother and a laptop for the children. Niva, a photography buff, would benefit from a new cellphone.
Nominated by: Connor Moran Children’s Cancer Foundation, 561-741-1144
To make a monetary donation, click the Donate button. Please do not mail cash or merchandise. If you have merchandise to donate, please contact the agency directly.