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Published in Under the Rainbow on December 01, 2013
John Matthew showcases his LEGO™ creations.
John Matthew showcases his LEGO™ creations.

Ordinary Boy, Extraordinary Courage

It comes out of nowhere, slicing deep into his gut and, in a way, his dreams, reminding him why he can't play football or baseball - games of hard knocks and sacrifices; things he knows so well.

Surrounded by his family, John Matthew  thanks everyone for attending the May 14 event in his honor at the Jackson Zoo. Introduced that day as the 2013 Children's Miracle Network Hospitals Mississippi Champion, John Matthew is accompanied by, from left, mom Mandy Davis, dad Matt Davis, and sisters Emme and Adee.
Surrounded by his family, John Matthew thanks everyone for attending the May 14 event in his honor at the Jackson Zoo. Introduced that day as the 2013 Children's Miracle Network Hospitals Mississippi Champion, John Matthew is accompanied by, from left, mom Mandy Davis, dad Matt Davis, and sisters Emme and Adee.

Sometimes the pain is so cruel that even his mother’s arms, wrapped around him, desperate as a prayer, can’t comfort him.

Blue Rubber Bleb Nevus Syndrome: John Matthew Davis Jr. was born with it nine years ago, a disease that might sound ridiculous – if it didn’t hurt so much.

A blood vessel disorder that manufactures tumors the way Detroit manufactures cars, it is the ringleader of a rabble of life-sapping hemorrhages and masses and agony that causes screams in the night.

“He’s the bravest person I’ve ever known,” says Mandy Davis, his mom.
This is why: He doesn’t complain.

The boy who’s like so many other boys of his age and time and culture is also just one of maybe 200 people on earth. A boy with a disease that is almost as rare as his courage.

The cheeks in his otherwise pallid face are as bright and red as the fire truck he rides above, making his grand entrance over the police cars’ flashing blue lights.

His eye wanders over the place that is his for a sultry May afternoon: the bears, monkeys, giraffes, and a Sumatran tiger named Emerson that he was allowed to “adopt.” All his.

It is John Matthew Davis Jr. Day at the Jackson Zoo, in honor of the new Children’s Miracle Network Hospitals Mississippi Champion.

John Matthew shows off a stuffed animal representing the real-life Sumatran tiger Emerson, a denizen of the Jackson Zoo. Zoo officials presented John Matthew a certificate of adoption for Emerson.
John Matthew shows off a stuffed animal representing the real-life Sumatran tiger Emerson, a denizen of the Jackson Zoo. Zoo officials presented John Matthew a certificate of adoption for Emerson.

Along with fall trips to Disney World and Washington, D.C., it means a year-long ambassadorship on behalf of Mississippi’s sick and injured children and, particularly, Batson Children’s Hospital, where John Matthew is a patient.

It takes a remarkable child to earn this crown, to be one of only 52 champions in the country representing 17 million children seen at the network’s 170 hospitals.  
John Matthew is extraordinary in other ways, too.

Inside his body, blood pools and his tissues swell like flooded lakes and rivers. Polyps develop on his intestines; the bowel, mistaking them for food, tries to digest them.

And then the pain is too much, even for his big heart.

“On the day he was born, he screamed bloody murder for 24 hours,” says Mandy Davis of Canton.

“He would take a bottle, and then he’d throw up. He could never sleep.”

By the time he was 8 months old, it was becoming clear his problems went beyond reflux disease and the fatty tumor on his head that was supposed to disappear.

One night, John Matthew’s mom raised his left arm to tickle him; the sight that confronted her made her head spin.

John Matthew pretends to hold the United States Capitol building during his Champions Across America tour in Washington D.C.
John Matthew pretends to hold the United States Capitol building during his Champions Across America tour in Washington D.C.

In his spare time, John Matthew builds houses.

He builds bridges and his own private derricks because he wants to work on oil rigs like his daddy.

In these moments, he, and only he, decides what his world will look and feel like. John Matthew loves his LEGOs.

He loves his golf cart, too. On his grandparents’ 170-acre Crooked Creek Ranch in Farmhaven, he, alone, steers his course in the woods.

He is also fond of Christian music, the ocean, diving boards and soldiers – he always stops and shakes their hands to thank them.

“They fight for us,” he explains.

Football and baseball are his favorite sports, the ones he cannot begin to play because of the risks to his fragile body, which is often sentenced to a hospital bed or wheelchair.

In spite of everything, his favorite color is blue.

Blue Rubber Bleb Nevus Syndrome: “blue rubber” for its appearance and texture, “bleb” for pustule or blister, “nevus” for lesion.

Worldwide, there are only 200 reported cases, says Medscape, the medical news and reference website.

John Matthew is all smiles when meeting Miss Mississippi, Marie Wicks.
John Matthew is all smiles when meeting Miss Mississippi, Marie Wicks.

The cause and cure are not known, but this complication is: internal bleeding. The culprits are the blebs, which resemble purplish-blue moles. They can hemorrhage, especially the ones on his colon.

Doctors have found masses in John Matthew’s chest wall, shoulder, neck, back, knees and head.

The night she tried to tickle him, Mandy Davis found one, too.

“There was a bulge sticking out from under his arm,” she says. “I freaked out, thinking the worst.”
 
Mandy Davis remembers when doctors from Children’s Hospital in Boston named her son’s disease. They emailed it to her while she was at work.

“I sat there and my jaw dropped for an hour,” she says.

Later, they would rescind the diagnosis. But after Mandy Davis discovered the mysterious blue “dots” on the bottom of John Matthew’s foot, the verdict, in Feb. 2008, was restored.

It wasn’t “the worst” thing she had imagined – cancer. What John Matthew has instead would give the vilest forms of cancer a run for their money, in terms of time and tears invested.

“How in the world can my child have something like this?” his mom says. “All these years later, it still hasn’t sunk in that my kid has something so rare.”

In Mississippi, there is no other child like him, as far as Dr. Betty Herrington knows.

A pediatric neuro-oncologist, Herrington is his “gatekeeper” physician at Batson, keeping track of the numerous other specialists who treat John Matthew.

“There is not just one medical home for this disease,” Herrington says.

John Matthew with parents, Mandy and Matt
John Matthew with parents, Mandy and Matt

At Batson, John Matthew has been cared for by surgeons, radiologists, hematologists, oncologists, gastroenterologists – the list goes on.

“Because of the hospital, he is here with us today,” Mandy Davis says.

When John Matthew was a baby, surgeons at Batson cut out a mass that was pushing his ribs so far apart it threatened to break them. No wonder he had been screaming.
 
They took out two ribs and part of his lung.

This was just the beginning. John Matthew has had two dozen operations to date, and some three dozen blood transfusions, about four for every year of his life.

He undergoes physical therapy, occupational therapy, chemotherapy and sclerotherapy, which forces blood to reroute through healthier veins.

He has anemia, asthma, urinary reflux, chronic lung disease and gastroesophageal reflux disease (GERD) – each caused, or could be caused, by Blue Rubber Bleb Nevus Syndrome.

“I was pretty much a zombie for the first year of John Matthew’s life,” Mandy Davis says. “Looking back, I don’t know how I got anything done.

“I constantly had to take off work. He caught everything that was going around at the daycare.

“The doctors said, ‘You have to quit work before he can get the surgeries he needs. And if he doesn’t get the surgeries, he won’t make it.’”

It was her job or her son.
 
As often happens in Mississippi to families in tight spots, the community has rallied around.

“You think, ‘The money, the insurance – but it doesn’t matter,” Mandy Davis says of her decision to quit her job.

“We will make it work somehow.”

Local fundraisers have helped make it work so far.

John Matthew’s family makes it easy for those who want to help, especially when Mandy Davis says things like this: “It’s a struggle; but it’s also a blessing. I’ve got a reminder every single day that life’s not forever. Most people forget that.

“I’m not going to sit around and cry about it and feel sorry for myself and for him. Because I know God has planned something amazing for him.”

It’s hard to turn away from Matt Sr. when he says of his son, “He’s taken us places I thought we’d never go.”  

Then there are Adee, 7, and Emme, 4, who go with their brother to the hospital, climb into the bed and watch movies with him; they fetch his blanket.

“They’re pretty rotten,” John Matthew says of his sisters. “I love them anyway.”

There’s Gwennie Lynn Ozborn of Canton. After John Matthew’s painful rib surgery, no one could calm him down, until she, his grandmother, held him.

There’s John Matthew himself, who says he’s glad he’s the sick one in the family “because no one else has to hurt.”

He hurts all the time.

The constant, everyday pain does not stop him.

Herrington, his physician, believes he’s used to it by now.

“I think he’s probably always had it,” she says.

To John Matthew, it is like an intruder trying to get to him. So he shoves pleasant thoughts up against it, like furniture against a door.

“I think about my sisters and my mommy and daddy,” he says, trying to explain his silence in the face of it.

“I think about a lot of things when I go into surgery. I’ve just been through it so many times. I know how bad it’s going to be.”

Often, John Matthew must travel to Boston. There, Dr. Steven Fishman, a rare, world-renowned expert at this, performs specialized bowel surgery at Children’s Hospital, where Herrington trained and did research.

But on a night three years ago, John Matthew woke up screaming and clutching his belly.  By the time he arrived at the Batson ER in Jackson, he was vomiting blood.

There was no time to go to Boston.
 
Mandy Davis didn’t know, at first, how close her son was to death.

She wouldn’t know until doctors at Batson told her.

At that moment, she may have thought about her twins. No one knows what caused the miscarriage in her second trimester.

About 11 months later, John Matthew had been born; suffering from day one, but always surviving.

Now, this.

“They said, ‘Your son will die if we don’t operate immediately,’” Mandy Davis recalls.

Hours later, Dr. David Sawaya, a general pediatric surgeon at Batson, had repaired the bowel obstruction; one of the worst nights of John Matthew’s life was over.

But the transfusions and surgeries will go on.

For a while, doctors have considered removing the bulk of a dangerous chest mass; but the surgery could jeopardize the use of John Matthew’s left arm.

The thought of this haunts his parents.

“It’s always something,” Mandy Davis says.
 
You wouldn’t know what his mom knows.

You wouldn’t know that the boy smiling at the alligator, beaming at the orangutan and laughing at the random squirrels cannot move his left arm above his elbow.

You wouldn’t know that his pain, on a scale of one to 10, is an eight.

Observing John Matthew on his day at the zoo, a stranger would be thoroughly fooled.
 
Even for outsiders who have heard his story, John Matthew’s pain is like a clean windshield – they know it’s there, but it’s easy to look past it.

So, what they see, if they want to, is an apparently robust, inquisitive child with glasses and a buzz haircut, his mouth smeared with the ruins of a bubble-gum snow cone. Just a boy at the zoo. A boy like any other boy.

But if you ask him the question every adult asks a child – “What do you want to be?” – John Matthew answers, “Regular.”

That means “normal,” his grandmother says.