MCCOLL — Three-year-old Julez’ Leigh “Juju” Perkins came back home in early September after months of hospital stays and surgeries following a rare brain cancer diagnosis.
Juju was first treated in March for what doctors believed was a double ear infection. A few weeks later, she had a seizure that was initially described as febrile, though she did not have a fever, Perkins said. When Juju later stopped walking, her family knew something more serious was wrong.
After neurology specialists evaluated her, doctors found an 11-centimeter brain mass. Perkins said the tumor was later diagnosed as a rare ependymoma-like brain cancer, a type seen in only about 10 people.
“They don’t really know how to treat it because it is so rare,” Perkins said. “Previous cases were treated with radiation, and if that does not work, they are looking at other options.”
So far, the brave little fighter has undergone four brain surgeries, suffered a brain bleed and spent 20 days in intensive care, her mother says. Since May 19, she has been out of the hospital for only 14 days.
While in Columbia, the family has stayed at Ronald McDonald House, which Perkins said has helped provide food, hygiene items, clothing, comfortable rooms, a playground and a playroom.
“It is awesome,” Perkins said. “If I did not have any money, I would not have to worry about food, hygiene or clothes. The people are so nice and always there to help with anything.”
A Piece of Good News
Perkins said doctors were unable to remove all of Juju’s tumor because of its location, so they performed a biopsy. Tissue from the tumor was donated by Perkins to the University of South Carolina for research because she explains, “Doctors have so little material to study when it comes to treating cancer this rare.”
Six days after the McColl-Bennettsville Welcome Home parade for Juju earlier this month, Perkins is happy to report that she received a call from her daughter’s doctor informing her that Juju’s “tumor” wasn’t really a tumor after all. Biopsy results confirmed the “tumor” was actually an allergic reaction the little girl’s body had to antibiotics she had been given—what looked like a tumor was mercifully treatable inflammation.
Juju is still receiving radiation treatment in Columbia five days a week. Perkins says she is on round 22 of 33 treatments this week and is expected to finish radiation Oct. 6, when she hopes to ring the bell marking the end of her treatment.
Help from Neighbors and Friends
Perkins said community support has also been overwhelming.
She said, “Children’s Cancer Partners of South Carolina helped reimburse gas expenses, and Alex’s Lemonade Stand Foundation has also provided support.”
Alex’s Lemonade Stand is organizing a lemonade stand Saturday at Family Dollar in McColl to raise money for another local family affected by childhood cancer, Perkins said. She encouraged the community to support their effort as it has supported Juju.
The Marlboro County Sheriff’s Office has also been a boon to the family, in more ways than one, says Perkins, sharing they have stayed in touch throughout her journey, bringing gifts and even putting together a toy car for Juju Monday afternoon. Her mother said this was a very welcome surprise for the little girl after her long morning of receiving radiation treatment.
“They have played a big part in keeping up with her,” Perkins added.
The Herald Advocate caught up with Chief Deputy Larry Turner with the Marlboro County Sheriff’s Office after Monday afternoon’s impromptu welcome home for Juju.
He said, “Today, members of the Marlboro County Sheriff’s Office [MCSO] and Detention Center were blessed with the opportunity to visit a very special young lady whom our entire community knows and loves as “Juju.” She is currently undergoing radiation treatments. While those treatments have taken a toll on her family, they have not taken away the bright spirit, joyful energy, and strength that make Juju so special. People throughout our area know Juju’s story and understand what she and her family are going through. Our community has continued to support them with love, encouragement, and prayer throughout this difficult journey. With the permission of her mother, Lindsey Perkins, we delivered gifts to Juju this afternoon for no reason other than lifting her spirits and reminding her that she is loved, supported, and surrounded by a community that cares deeply for her.”
Speaking on behalf of the MCSO and Detention Center, Turner added that bringing Miss Juju her new car was a bright spot in everyone’s day.
“Being able to bring a little happiness to a child facing circumstances no child should have to endure was truly a humbling experience. Although we went there hoping to bless Juju; her smile, energy, and courage were an even greater blessing to us,” Turner said, adding, he hopes the Marlboro County community will continue to join the Marlboro County Sheriff’s and Detention Center in keeping Juju, Lindsey, and their entire family in your thoughts and prayers. The MCSO encourages you to stay strong, Juju, and want you to know your community stands with you.”
Despite Juju’s difficult treatment schedule, her mother says she is a resilient child who loves being outside— especially digging her hands in the dirt! She enjoys animals, riding in her wagon, using her pail, swinging and driving her toy car, Perkins said.
When it comes to finding a calm moment, Perkins says her daughter loves to watch favorites like “Bluey,” “SpongeBob SquarePants” and “Gabby’s Dollhouse.”
Perkins says the family could not get through this challenging time if it were not for the outpouring of support they have received through donations and prayers.