On March 3, 2016, Ma’Laijah May — a bubbly, outgoing and talktative little girl — saw her life change almost overnight.
That’s when she was diagnosed with Diffused Intrinsic Pontine Glioma, a highly aggressive brain tumor that can be difficult to treat.
Because of the location of Ma’Laijah’s tumor and because her cancer is so rare doctors can’t operate.
They had given her a year to live.
But a year later, she is still fighting.
She has completed her first round of radiation and is now preparing for chemotheraphy.
Her family wants to get a second opinion before she begins her first round of chemo.
“She was doing really good after the radiation and we found out the tumor began to grow again,” her mother Tempestt said.
She left her job at Sonic Drive-In to take care of her daughter full time.
“They have my job open for me, but I just want to focus on her,” she said.
May’s tumor was the size of a golf ball and now it has grown to twice that size.
“She can’t keep her balance. She has a wheelchair, but they encourage us to keep up and walking. She has limited mobility,” Tempestt May said.
She said Ma’Laijah as lost the ability to move her right eyelid.
“It won’t close anymore, she can’t blink her eye,” she said.
She also has lost some mobility in her legs
But Ma’Laijah remains in good spirits.
“She doesn’t like to go (out) as much as she did, but she still plays with her toys. She’s still my baby,” she said.
May was in the first grade at North Pike Elementary School but now she’s home schooled. Tempestt said Ma’Laijah’s doctor didn’t want her to continue to school, even though she still wanted to.
Ma’Laijah also attends Personal Pediatric Care in McComb, a center focused on children who have special medical needs.
“She was doing good at first, but we had to take her out (of school) because she gets tired. Now, she’s homeschooled. The school sends a teacher out to the daycare,” she said.
Tempestt said the family is trying to get Ma’Laijah to the MD Anderson Cancer Center in Houston, Texas, for a trial treatment that will initially cost $23,000.
“That doesn’t even include treatment. That’s just the MRI and blood work,” Tempestt May said.
Ma’Laijah could receive further treatments at $10,000 per session.
May said she sought a second opinion after doctors in Jackson told her they’ve done what they could.
“Her doctor never has anything good to say about what’s going on,” May said.
May said she’s also looking into getting her daughter treatment at St. Jude Children’s Research Hospital in Memphis, Tenn., and hospitals in Maryland, New Orleans and Atlanta.
But Ma’Laijah must start chemotherapy soon.
“We’re going to get her into the first place that’s open,” Tempestt May said.
May said Ma’Laijah knows something is wrong with her but she doesn’t fully understand her condition.
“She’s really smart. She comprehends well. We try not to talk around her. She doesn’t know everything, but she knows something is wrong,” May said. “She’s only 6. I can’t imagine what she goes through.”
She’s holding onto hope that her daughter can receive the clinical treatment in Texas. Even though it may not work, it seems to be Ma’Laijah’s best option.
“It’s just a trial. They don’t know if it’s going to work or not. The doctors don’t know everything,” Tempestt May said. “They gave her a year and she outlived that.
“There’s no cure, they can’t remove it, all of this is just to see if it will work. We have to try everything we can. ”
May said it hasn’t easy, but she’s learning to cope.
“You never get used to it. You have to keep the faith. All they’re doing is prolonging her life, that’s it.” she said. “If they can get the tumor to shrink down, she can live with it.”
She credits her strength to God and her support system, including her friends, family and church, True Gospel Baptist.
“My faith wasn’t as strong as it is now. When it first happened, I asked, ‘Why my baby? That’s my only child,’ ” she said.
May said her faith is even stronger now.
“I have no other choice but to depend on God. He wants to show how powerful He is and it’s up to you to accept it,” she said.
May said since people have learned of Ma’Laijah’s diagnosis, she has received constant support.
She said Ma’Laijah’s teachers at North Pike, Karen McKee and Caitlin Davis, are holding a T-shirt fundrasier for her. Wanda Jackson, Eric Jones, Semon Dillon and Amayah Lewis also have held fundraisers, as have her co-workers at Sonic, and Personal Pediatric Care is taking donations. Yeshuna Simmons, May’s aunt, began a GoFundMe account.
“We are asking for your help at making the both of them as comfortable as possible and to keep Tempestt from stressing,” Simmons writes in the account profile. “We also ask for you to keep Ma'Laijah in yours prayers as well as Tempestt and the rest of the family as we get used to the changes.”
There also is a benefit account in May’s name at Pike National Bank.
“We need all the help we can get,” May said.
She said she thanks everyone for the outpouring of love for her daughter.
“I am more than grateful for the support,” May said.
