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NICOLE HESTER/THE NATCHEZ DEMOCRAT — Aiden Taunton lifts up her Little Mermaid bubble machine Friday at her home in Monterey. She received the toy on her Make-a-Wish trip to Disney World.

Aiden Taunton, 4, has the medical port on the left side of her head cleaned by her mother, Megan Taunton, as part of her usual nighttime routine. Aiden calls the medical port Teddy.

Colin Taunton, holds his daughter, Aiden Taunton at their home in Monterey in 2016 when Aiden was undergoing treatments.

Aiden makes her mother laugh while she flexes her muscles in the mirror during her morning routine.

Aiden takes oral medication at home each day.

When 4-year-old Aiden Taunton went to Bristol, England, with her family they did some of the usual tourist things, visiting a zoo and aquarium, taking in a few sights.

Then, Aiden got Teddy.

But Teddy isn’t just another toy or a piece of vacation kitsch to be briefly loved before being dropped in a corner or swept under a bed. Teddy was the reason Aiden was in England in the first place.

Teddy is a medical port on the left side of Aiden’s head. From it, inside her head, extend micro-catheters directly to a location near her brain stem; doctors and her parents hope the catheters can deliver with precision a kill shot to an entirely different kind of traveling companion with which she has been living.

Her father, Collin Taunton, calls it “that monster.” Doctors call it DIPG.

Diffuse Intrinsic Pontine Glioma isn’t just a brain tumor. It grows at a breakneck rate and ironically finds its genesis in the brain’s glial tissue, which is meant to function as support and protection for brain neurons. As it progresses, it suppresses nervous system function, rendering its victims unable to walk, close their eyelids and in some cases chew.

DIPG almost exclusively targets children and is rare enough that only 300 children are diagnosed with it every year. Surgery isn’t an option because of how DIPG positions itself on the nervous system, and radiation treatment is considered a time buyer, not a lifesaver.

More than 97 percent of cases die within the first three years, 90 percent of those within 18 months.

That’s where Teddy — a name Aiden gave the port, as if it was a pet or a toy, after it was installed — comes in. Teddy represents hope.

Aiden is receiving an experimental treatment so experimental it’s not even in clinical trials yet. In fact, she’s the first person in the world to receive it.

Naming the enemy

Aiden was a normal 3-year-old — fun and sweet, but temperamental and assertive.

But that temper took a turn from being a strong will to a disconcerting behavior change, screaming and fits lasting far longer than they should have, Aiden unable to come down from whatever had agitated her.

At the same time, her play took on an odd character. If she needed a toy on the right side of the table, she’d turn the left side of her body to pick it up.

Her right eye started drifting, and she’d often complain of headaches, so her parents had her vision tested. Aiden had astigmatism, but not to the extent that it would cause pain.

That’s when they decided it was time to get an MRI.

Oct. 1, 2015, was when they met the monster, a massive wad of tissue pushing against Aiden’s brain stem like it wanted to strangle it. The mass was so large it was blocking the flow of her spinal fluid.

In the months since then, the Tauntons have chosen to live in a state of quiet but enthusiastic optimism, leaning on faith and trusting that through prayer and the marvels of modern medicine God will cure Aiden.

But that first day, Collin said, was one of the only times he saw his wife and Aiden’s mother, Megan, cry.

“Other than that, she’s the one who kind of helps me when I get down,” he said. “She’s the one who’s more spiritually strong, and she can point me right when I get down.”

Since the diagnosis, however, tears and fears have had to wait. Sometimes you have to stand up, strengthen your knees with prayer and move forward knowing that hope and faith are what you have, the couple said.

“It is a mind battle every day — you can choose to be angry, and you can choose that ‘This is my life, and I am going to live it,’” Megan Taunton said. “The Bible says that in times like this you will have a peace that surpasses understanding, and that is what I have had through all of this.”

Peace and hope don’t mean sitting still — hope is also a verb.

Fighting the monster

The first weeks were a dash, first to a children’s hospital in Lafayette, then a second one in Texas. They had doubts, unsure if they were taking the right course of action, seeking treatment in Texas instead of at St. Jude Children’s Research Hospital in Memphis. Finally, Collin asked a caseworker what she thought.

“She pulled her badge off, put it on the table and said, ‘I can’t tell you this as a case worker,’ but she said, ‘If this was my child, St. Jude is where I’d have her,’” Collin said.

The transfer to St. Jude wasn’t easy. Aiden didn’t want to leave Megan’s side, but Megan was six months pregnant, and flying in an airplane after a certain point in pregnancy is often discouraged. 

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