Hamburg third-grader fighting cancer

HAMBURG — On a late October day in 2015, Debbie Manners stood in a hallway outside of her son's room at Newton hospital, overwhelmed, physically spent, and fraught with fear.

The past three days had been a grueling blur of nurses, CAT scans, and imposing words such as craniectomy and subdural ventricular puncture. Just like that, the blissful comfort of a mundane, ordinary life was changed with three words.

It's a mass.
There's an old proverb that reads, "A mother understands what a child does not say", and these words were proven true when Manners took her third-grade son, Malaki Thomas to the emergency room for an unrelenting bout of nausea and vomiting. Kids get sick all the time, and initially doctors told Manners that they were seeing many patients with similar symptoms; the culprit was most likely a stomach bug. But something was amiss. Manners felt this was more than any virus and expressed her concerns to the medical staff who did agree to keep Malaki overnight for observation.

"I know my child and he wasn't acting like himself," says Manners. "Everything was like real slow motion, when he talked the words were long and very stretched out. I knew in my gut something was very wrong because he was not making sense to me, saying odd things like, 'I'm throwing up puppets'," she recalls.

Still, Manners was told everything was fine. It was only when she and a nurse were helping Malaki to the bathroom and he collapsed into a seizure that it became apparent Manners had been right all along. The young boy was rushed upstairs for a CAT scan, and Manners was told a neurosurgeon was on his way in. Before the results of the CAT scan came back, Manners already knew what was really wrong with her child.

"They came back and told me it's a mass, and I just looked at them and said, you mean 'it's a tumor'," says Manners. "I just knew."

Malaki was diagnosed with Primitive Neuroectoderma Tumor or PNET, which is a cancerous, rare tumor that requires brain surgery, aggressive chemotherapy, and radiation. He immediately underwent surgery to drain major fluid buildup in his head. Manner's jubilant 9-year-old with the perpetual rosy cheeks now lay in the Pediatric Intensive Care Unit, with drainage tubes in his head. Reeling from the events, Manners worried how she would break the devastating news to her young son once he awoke from surgery.

"I was afraid of what to tell him, how to word it, and what his reaction would be," said Manners, remembering the fear that gripped her as she waited for Malaki to awaken.

Three days had past since he collapsed on the floor. With the support of her ex-husband, and older son, Manners took a breath and informed Malaki of his diagnosis. Not surprisingly, he started to cry, but it wasn't because he just learned he had cancer.

I've been asleep for three days," stammered Malaki. "Did I miss Halloween?"

"He didn't care about the tumor!" marveled Manners. "All he was worried about was if he had missed Halloween and he was so relived when we told him he didn't."

Malaki, an avid Star Wars fan, had a chosen a Stormtrooper costume and nothing was going to stop him from wearing it. It has been this attitude exhibited by both Malaki, and his mom, that have kept the duo afloat, and smiling through surgery which removed part of the tumor, a chemo port installed, and intensive rounds of radiation. Mom and son grumble about the parking at Morristown Hospital. They giggle over x-rays that show the distinct outline of Malaki's "tush" and look forward to when Malaki is able to return to Hamburg School.

Malaki shares that the very worst part of having cancer is the "gross smell" during radiation. Although Manners has done her fair share of crying and worrying, she doesn't hide anything from her son when it comes to his diagnosis.

"I don't want anyone whispering around him," says Manners. "He knows everything that is going on. He has cancer. We say it out loud."

This honest approach seemed to have only heightened the bravery inside him. Asked if he was scared, Malaki shoots a quizzical look and asks, "Scared of what?"

Are you scared of having cancer?

Shrugging, he answers, "Not really," and turns his focus back to his favorite game, Jenga, cackling with wild abandon as the wooden pieces tumble across the dining room table.

Still, despite the family's resilience, it is sometimes hard for Manners, a single mother, to manage the toll the illness is taking. Chemotherapy and radiation make Malaki extremely nauseous, and although drugs such as Zofran took the edge off initially, he is now queasy around the clock. Full after a few bites of food, Malaki has dropped more than 7 pounds in a few short weeks. He is able to tolerate banana flavored Pediasure, and vanilla flavored Boost, however a six count pack 8 oz. bottles costs about $10.99.

Since he needs to drink at least three per day, a prescription was written by his doctor, however the insurance company does not want to cover a supplemental drink. Malaki's doctor is working to get a Prior Authorization approved through the insurance so that the third-grader does not continue to lose more weight.

"It's difficult to see a 9-year-old boy shriveling to nothing. Insurance companies don't view this as medicine, even though he need it to survive," Manners said.

Manners continues to stay strong, especially as the community has rallied around to help Malaki. Local businesses have donated to help the family with medical expenses. Hamburg School has organized a collection of gas and gift cards to help in covering hospital travel costs. The Malaki Thomas Fundraiser, which can be found on giveforward.com is striving to raise money for the family.

"We were driving one day and Malaki said, 'This is not going to kill me'," says Manners. "I froze and asked him, 'is that a question you are asking me?' Malaki said, 'No Mom, that is a statement I am making.'

"I looked at him and told him, Malaki, this may be your battle, but it's the community's war because they are helping you fight this," she said.

"And you will beat this."
For more information please visit Miracles For Malaki on Facebook.