Jules is the baby Mardi Johnson thought she’d never have.
But there he was, all hers to love.
The 38-year-old world’s was rocked when a potential deadly brain tumor was discovered at the back of her then-18-month-old’s brain on January 30.
“I honestly didn’t think I could have kids,” the Kettering resident told me. “I have him and I feel like, ‘Oh God, you’re going to take him from me. You wait all this time to give me what I’ve been wanting for a long time and then you going to take him from me that quick.'”
Mardi, a dental hygienist, said Jules just wasn’t acting himself in the weeks that lead to the cancer diagnosis.
“He had some intermittent vomiting. It was mostly at night and a few times during the day. It wasn’t real regular. Just real sporadic,” she said. “I was taking him back and forth to the pediatrician and he was like ‘I think it is just allergies. The sinus drainage in his stomach causing his stomach to be irritated.'”
Jules eventually developed swelling in his left eye. The doctor gave his mom a cream to treat it. She knew that wouldn’t be enough.
“The next day, the babysitter said he slept all day,” Mardi recalled. “I decide I need to find out what is going on with my baby.”
She rushed Jules to Dayton Children’s Hospital.
A Medulloblastoma tumor was diagnosed.
For six hours and 15 minutes, Dayton Children’s Dr. Laurence Kleiner operated to remove Jules’ tumor. It blocked his spinal fluid, causing hydrocephalus (water on the brain).
Mardi considers Kleiner a Godsend.
Kleiner urged mother’s to trust their instincts.
“Mom is always right. You learn that in pediatrics,” Kleiner, a neurosurgeon said. “She says there is a problem, there is a problem.”
After leukemia, Kleiner said a brain tumor is are second most common cancer in children. Symptoms can include headaches, crossed eyes, nausea, vomiting, sunset eyes (low pupils), drowsiness and bulging in the soft spot.
Medulloblastoma is a fast-growing, high-grade tumor according to the American Brain Tumor Association.
It was particularly “nasty” when Kleiner started his career 34 years ago.
“We use to give nine different types of chemotherapy (drugs),” Kleiner said. “We were throwing everything at these tumors because the prognosis was so horrible.”
Today, 70 to 80 percent 0f children with average-risk medulloblastoma are alive and disease free at least five years after the diagnosis, the association says.
They are far from out of harm’s way when cancer free.
Developmental delays, cancer and other health issues are concerns years after treatment, and patients require ongoing testing.
Today’s treatment typical involves surgery, chemotherapy and radiation for children older than age 4 due to the developmental delays it can cause.
“Those effect can sometime occur 15 to 20 years out,” Kleiner said. “The good thing is we are having kids with medulloblastoma who do live 15 to 20 years out.”
Jules, who recently turned 2 years old, has already undergone several rounds of chemotherapy.
Community activist and promoter Tommy Owens, Jules’ godfather, said the toddler and his mom can teach lessons about faith and courage.
Jules has been a trooper through an ordeal that many adults can not imagine, Owens told me.
Mardi has seen her world turned on its head. The Arkansas-native took a leave from her job to care for Jules as he battles cancer.
“This is a strong woman,” Owens said of Mardi, whom he considers a sister.
A co-worker has established a GoFundme account to support Mardi and her son.
Marlon Shackelford, a community activist like Owens, said that Mardi, a Dayton area resident of a dozen years, is more than worthy of the community’s help.
She has donated hundreds of hours to vulnerable youth, and to programs such as the now-defunct Dayton Urban League, Street Souljahz and Family Affair “Biggest Talent Show in the Midwest,” he said.
“I work with a lot of women who say they work with kids, but I promise you, they ain’t got the heart,” he said. “You’ve got to have a heart for this.”
Shackelford said that likewise, Jules has the spirit to make the world a brighter place.