'Lionhearted' Wantagh boy fights rare form of cancer

A 5-year-old Wantagh boy fighting an aggressive form of terminal cancer appears to have the heart of a lion. The Levittown Fire Department, along with Santa Claus, gathered at Luis Mendez III’s house on Dec. 21 to grant his Christmas wish to see Santa at home.

Around 100 family members, friends, neighbors and elected officials, and Luis III’s family — his parents, Luis Jr. and Karla, and his 3-year-old twin sisters, Ava and Sofia — joined the Fire Department and dressed up for a Christmas celebration outside the Mendez home.

Luis III, affectionately dubbed Lionheart Lou by his family and those who support his fight, was diagnosed in August 2017 with diffuse intrinsic pontine glioma, which most often takes the form of a tumor in the brain stem. His only symptoms were a teary left eye and occasional headaches. After a CT scan, two eye exams and an MRI confirmed the diagnosis, the doctors at Cohen Children’s Hospital in New Hyde Park told the Mendez family that they believed Luis had just three to six months to live.

Sixteen months later, he continues to beat the odds.

DIPGs are highly aggressive and difficult to treat, according to the Boston Children’s Hospital website. They affect the part of the brain that controls many of the body’s most important functions, including breathing, blood pressure and heart rate. Roughly 200 children in the U.S. are diagnosed with this incurable form of cancer each year.

Luis has already endured 30 rounds of radiation therapy. “He has been poked, prodded, examined, tested and consumed unimaginable medicines and treatments that I wouldn’t wish on anyone,” his father wrote in a flier last year.

Starting in November 2017, Luis’s parents took him to the Angeles Hospital in Monterrey, Mexico, every four weeks for experimental chemotherapy treatments costing $15,000 to $20,000 per treatment. The doctors there told the Mendezes in April that his tumor had grown slightly larger. He was scheduled to go to Monterrey for his 10th treatment in September, but he caught pneumonia. At that point, he was having trouble walking and talking, and his parents decided to end the treatments and the travel.

Karla and Luis Jr. spoke to other parents of children with DIPG to see how they were coping with the disease. After visiting major hospitals all over the U.S. and researching treatment options, they concluded that there weren’t many options north of Mexico. American doctors told the couple that they could not treat their son, and that they should “go home and make memories,” according to Luis Jr.

Luis III now receives IV infusions of vitamin C and glutathione every three days, and takes an assortment of vitamins, as well as turmeric, cumin and black seed oil. “We do everything under the sun to try to make him as comfortable and to help him with anything,” Karla said.

“We pray a lot,” she added. “We’re very faithful . . . We’ll do anything to help find a cure for our son.”

The Mendezes’ insurance does not cover all of the medical costs, Karla said. She has taken time off from her job as an ultrasound technician at Plainview Hospital to care for and spend time with her son. Luis Jr., a corrections officer for the Nassau County Sheriff’s Department, has taken a leave of absence to be home as well. His co-workers have volunteered their leave of absence time to him so he can continue to get paid yet remain at home.

The family receives gifts and food from family, friends and local businesses. Neighbors have dropped off Christmas gifts for the Mendez children and food for the family. Thanks to the generosity, Karla said, she hasn’t had to do much grocery shopping and can spend more time with her son.

“The biggest thing about this is that we see so much bad, but there is so much good,” Karla said. “There are amazing people.”

To help Luis and his family, visit the webpage Facebook.com/LuisMendez2340 or donate through the links Paypal.me/LionheartLou and www.gofundme.com/lionheart-lou.