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Posted on Sun. Feb. 03, 2013 - 12:01 am EDT

Big family, small miracle

Haitian boy finds support while here for facial surgery

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John Wesley Francois is a little boy facing big problems. Fortunately, he also has a big heart.

And so does the Fort Wayne family who has made looking after him their big priority.

The 4-year-old was born in Croix des Bouquets, a village just northeast of Port-au-Prince, the capital of Haiti. John Wesley and his parents survived the devastating earthquake in 2010. But around that time, his mother discovered a small lump inside her son’s mouth.

Those who know her story say she was diligent about trying to get medical care. But, strapped by poverty even in normal times, the medical system in Haiti was little help. She and her husband even took John Wesley to the Dominican Republic to see doctors there. But they, too, had little to offer.

As months passed, the lump in John Wesley’s right cheek became bigger – first, the size of a golf ball, then a baseball. It was a tumor, and although it wasn’t cancerous, it was very aggressive.

And it was in an awful spot. The tumor was not only disfiguring, but as it grew to fill the boy’s mouth, it became extremely difficult for him to chew or swallow or even breathe.

Enter Rebecca Ghent of Fort Wayne, a retired nurse who had worked for 15 years for area doctors who specialized in craniofacial conditions. Browsing the website of Angel Mission-Haiti, one of the organizations she knew that worked on behalf of such children, she saw a picture of John Wesley.

His condition seemed relatively benign, she says, but when she saw the diagnosis – juvenile fibromatosis – she contacted one of the doctors she knew who’d previously helped in similar cases.

“We can’t let this little boy live like this,” the doctor said. Indeed, he told Ghent, John Wesley probably wouldn’t live to grow up unless he got treatment in the United States.

“In Haiti, it was a death sentence,” Ghent says of the tumor. “This was it for him. It was his last chance.”

So wheels started turning to get John Wesley care donated by local doctors. Then, one night, about a year ago, Amy Radcliff of Fort Wayne was on Facebook and happened to see a posting from Ghent, a friend of a friend. Ghent was trying to find a host family with whom John Wesley could live while getting care.

“I can do that,” Radcliff, 33, a mother of four boys, said to herself.

She and her husband, Tim, 36, had never met Ghent. They knew hosting another child would be “a stretch.” But they wanted to help because people they didn’t even know had surrounded their family with compassion when their oldest son, Aiden, 10, went through treatment for leukemia about five years ago.

“I made a few phone calls, and we were told we would be a great fit,” says Radcliff, whose youngest son, Andrew, is the same age as John Wesley. The other boys are Ethan, 8, and Joshua, 6.

And so they began their wait for John Wesley to arrive for what they thought would be a simple, few-week stay.

Journey begins

But in Haiti, things had taken a turn for the worse.

Between January of last year and the end of March, when the boy was cleared for travel, the tumor had grown. It was now nearly the size of a grapefruit, spilled out of his lips and smelled of rotting flesh.

His mother – the family ostracized because of her son’s condition – had been trying to feed him at home through a straw. But he was chronically malnourished and dehydrated.

When John Wesley was put on a plane for Miami, he weighed only about 25 pounds. An experienced nurse traveling with him became so worried that, during a planned layover, she took him to a hospital emergency room.

As it turned out, John Wesley was “critically ill,” Ghent says. His hemoglobin count had dropped to 2 – normal is around 12 – because of malnutrition and because the tumor had set up so many blood vessels, it was diverting blood from his body. He couldn’t swallow and could barely breathe.

“We were told that had he not been here, he would not have made it in Haiti (through) that weekend,” Radcliff says.

After a blood transfusion and intravenous fluids, the hospital agreed to release John Wesley because Lutheran Children’s Hospital in Fort Wayne agreed to continue care. He was put on another plane to Ohio, where Radcliff and Ghent picked him up.

He would spend about 10 days hospitalized as doctors stabilized him with a tube in his throat so he could breathe and a feeding tube directly into his stomach.

Tests were run and specialists consulted about removing the tumor – a plastic surgeon, a pediatric oral surgeon, a pediatric neurosurgeon, a pediatric neurologist and an anesthesiologist willing to work around the airway problems.

In a long shot, doctors also tried to shrink the tumor with chemotherapy, but it didn’t work. And there was more bad news. The tumor was impinging on the boy’s carotid artery, a large blood vessel that feeds the brain.

Doctors thought they didn’t have the expertise to operate.

“It got to the point where it was bigger than all of us,” Radcliff says. “Lutheran did a phenomenal job. They saved his life.”

After more consultations, the hospital of the University of Michigan in Ann Arbor agreed to do surgery, but not until August.

And, ironically, as John Wesley got better nourishment, the tumor “just bloomed,” Radcliff says. “It doubled or tripled in size.”

But the little boy flew through the nearly 12-hour operation, which included reconstruction of his cheek and eye socket and part of his jaw. Doctors used part of two ribs to replace bone.

He surprised everyone when, three days later, he was up and around and came home five days after that.

“You could see him go from this lifeless mass to a little boy with some sass,” Ghent says.

One of the boys

Sass is something Radcliff doesn’t exactly discourage now. One afternoon late last month, John Wesley was romping around the house with his “American brothers,” as the boys call themselves. He drew pictures while she homeschooled the older boys and rough-housed on the sofa with Joshua. When the button on his feeding tube popped off, Joshua was quick to replace it.

That week was the first time John Wesley could eat without needing the tube. “He’s discovered popcorn. He loves popcorn,” Radcliff says with a smile. “And he likes to drink Coke with a straw.”

She says she can barely believe the difference in the child since she first met him. In the beginning, John Wesley just sat on the sofa for days, almost like a person in shock. He spoke no English – and couldn’t talk anyway because of the tumor, which she covered with a surgical mask when the family went out in public so as not to alarm others.

John Wesley not only learned enough English to communicate within six weeks but also learned to talk around his breathing tube.

“I don’t know how he did it,” she adds. “He’s a smart little boy.”

Still, he has much ahead of him. Doctors say the tumor is likely to regrow – so they left part of his palate open to make additional surgery easier.

He also faces further reconstructive surgery, but it can’t be done until August at the earliest. And he’ll likely need tooth implants.

Radcliff says she hopes to bring John Wesley’s mother for a visit soon. He may stay as long as a year more on his current medical visa. But the goal, she says, is always for him to go home to be with his family.

For now, Radcliff is happy he’s part of hers.

“He plays well, and gets along and fights and makes up like a brother,” she says. “He does great. He’s one of my boys.”

rsalter@jg.net

 

 


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