Youngster who fought cancer known for kindness, bravery
Mateo Sparkman-Luna told his mother, Paloma Luna, that he was going to paint sunsets with God after he died.
On Aug. 23, a rare and inoperable brain tumor took the 6-yearold’s life. In the weeks since, his mother, father and two little sisters have looked for him in the orange glow at the end of each day.
Mateo died at home in the San Antonio suburb of Cibolo just hours after he finished putting photos of family members in picture frames. He leaves behind a legacy of kindness and bravery that earned him an official city of Cibolo proclamation, a parade, a superhero certificate from a Batman impersonator who visits terminally ill children in hospitals, and thousands of fans who followed his journey on social media.
Mateo battled diffuse intrinsic pontine glioma, a cancer that affects between 200 and 400 young children in the U.S. a year. It has a five-year survival rate of less than 1 percent. Half the children die within nine months of diagnosis. Mateo fought for 369 days.
He is survived by his parents, Paloma and Alex Sparkman-Royo, and his sisters, 2-year-old Dahlia and 1-year-old Olivia.
Journey begins
Mateo’s battle ranged from hope to excruciating pain for his family as he lost, one by one, the things that defined him — his hair, the use of his legs and hands, his mischievous smirk.
Mateo, who loved Super Mario
Bros. and strawberries-and-cream frappucinos, signed the O in his name with a pumpkin. He wanted to grow up to be an artist. When he lost the ability to draw, his father, Alex, told him that movie directors are artists, too. So Mateo directed his parents’ hands across the blank canvas.
Mateo was diagnosed with cancer on his second day of kindergarten. Headaches and dizziness spun him between two pediatricians until a CT scan and an MRI revealed the worst.
He then underwent 30 rounds of radiation without anesthesia.
Last October, Mateo rang the “end of treatment gong” at the University of Texas MD Anderson Cancer Center in Houston.
“He’s so brave,” Paloma wrote on a Facebook page she and her husband created for their son. It was among the first of many posts that attracted thousands of followers.
By December, Mateo’s symptoms appeared to have improved.
But “you don’t want to think of what is to come,” Paloma told a nonprofit organization months ago.
So the family focused on making memories. Mateo’s smirk was captured in photos at Fiesta Texas, Natural Bridge Caverns, a snake farm and SeaWorld San Antonio.
But in February, when he participated in a trial at Columbia University in New York, his parents told him that he might not be able to walk, talk or move.
He told them he was looking forward to seeing the Statue of Liberty.
“Kids are so strong,” Paloma wrote.
‘The Big Bad Guy’
Mateo was 3 when Dahlia arrived. Their little sister followed last May. Mateo immediately took to the role of big brother. He dried tears, shared toys and kept everyone in line.
While Paloma was pregnant with Dahlia, Mateo would place a blanket on her while she slept on the couch. “You don’t expect a 3 ½-year-old to do that,” Paloma told Hearst Newspapers.
Just months after his diagnosis, he started a lemonade stand to raise money for a local animal shelter. He dropped off an envelope containing $674.50.
Though he was known for his acts of kindness, his parents said he enjoyed playing the role of the villain.
He called himself “Mateo, the Big Bad Guy” and helped the Joker and Lex Luthor defeat Batman and Superman.
Mateo celebrated his sixth birthday with the San Antonio Batman and a parade of strangers. Mateo handed out Mario and Luigi cookies, and viewers at home saw him on local television accepting a present from Iron Man.
In April, as the family drove to Dallas for more treatments, his parents thought he might beat the odds. But Mateo was diagnosed with leptomeningeal dissemination, an even more aggressive form of the cancer.
Paloma and Alex held back tears when they learned of the diagnosis. How long did he have?
Four weeks to four months, the doctor said.
‘I hate this … cancer’
Another round of radiation and
experimental medications followed. But Mateo’s health rapidly declined.
His attitude toward treatment changed. He was fed up with being poked and prodded. Tears ran down his cheeks during preparation for radiation. His speech declined, and he choked more often while he ate and drank.
When he received a wheelchair, he promised his parents he would regain the use of his legs. All he needed to do was exercise, he said.
By May, Mateo had made it past four weeks, but he lost his hair. During a Facebook Live, a partly bald Mateo giggled as he shaved his father’s head and clipped his mother’s ponytail. That was a good day.
Many bad days followed. Vomiting and severe headaches sent him in and out of the emergency room and the intensive care unit for months. A photo posted on Facebook showed a teary-eyed Paloma kissing Mateo’s forehead as he sits, eyes closed, in the hospital bed.
“I hate this f—ing cancer,” she wrote. “There are no words to describe how horrible this feels.”
By June, the things that made Mateo himself faded in and out. He no longer smirked. The twinkle in his eye was gone, and he didn’t want to draw or play video games. He was sick of throwing up and taking so many medications.
At times, all he wanted to do was float weightlessly in the swimming pool.
“I feel like our prayers and hopes have become more feeble and desperate,” Paloma wrote on Facebook.
The family waited for another experimental trial but was told there would be further delays.
Anniversary
The city of Cibolo declared July 20 Mateo Sparkman-Luna Day. In a small ceremony with city officials and his family, Mateo was named police chief for a short while.
Soon after, he returned to the ER.
On Aug. 19, Mateo reached the anniversary of his diagnosis. He and his family celebrated in a hotel on the River Walk in San Antonio. They ate pancakes, and Mateo munched on an Oreo paleta. He appeared to have so much energy when they visited Legoland Discovery Center San Antonio and an aquarium.
But his health worsened. Three days later, at 1:01 a.m., Mateo died.
“We aren’t ready to lose our baby and never will be,” Paloma wrote on Facebook.
The evening after his death, Mateo’s family took a walk to catch the sunset.
“Mateo put on a show,” Paloma said.
His funeral was held Friday at Our Lady of Perpetual Help in the suburb of Selma, followed by a celebration of life at the San Antonio Zoo. He will be buried at Sunset Memorial Park in San Antonio in the Garden of Hope.