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Stem cell therapy combats a one-in-a-million immune disorder for 4-year-old boy

Elizabeth Koh, Miami Herald on

Published in Health & Fitness

What she didn't know then was that Jovon's genetic disorder -- yet undetected -- meant his body's immune system couldn't correctly respond to the Epstein-Barr virus that would otherwise remain latent. Jovon kept losing weight. He developed pneumonia. Usually brimming with energy, the toddler began sleeping constantly.

"He was just staring off into space; he wouldn't focus his eyes on anything," she said.

Jovon re-entered the hospital to treat his pneumonia in January, but it wasn't until the end of March, when his symptoms worsened considerably, that he was admitted to Jackson Memorial Hospital for a possible immune disorder. By then, the boy's weight had plummeted to 20 pounds, Fluellen said. He couldn't walk, eat or talk. She feared she might lose her only son before he got to kindergarten.

The doctors at other hospitals had done some immune tests, but Jovon's visit in the spring of 2017, which showed he had the mono virus in his blood again, finally gave Fluellen's fear a name: X-linked lymphoproliferative disease, or XLP. His lymph nodes were so enlarged Fluellen noticed the swelling, and doctors found he had a tumor in his neck so large it was blocking half of his air pipe.

Jovon and his family had an appointment at the Sylvester Comprehensive Cancer Center scheduled that May. Jovon's dire condition bumped them up the list.

At Sylvester's pediatric clinic, named Alex's Place, Jovon was quickly put on a four-month chemotherapy regimen to treat the tumor. Kleiner successfully requested permission from the FDA to try a new stem cell treatment on Jovon, intended to replenish his supply of T cells, which help fight infection. By the time his main chemotherapy had ended in August, Fluellen said, her son had started to gain weight again and return to his normal, rambunctious self.

Jovon's renewing health was clear this week, when just in time for Halloween, he was zooming around the floor during his immunoglobulin therapy in his appropriately speedy Flash costume. Nurses trailed behind him so his IV stand, tethered to the port still implanted in his left chest, wouldn't get tangled in his own legs as he scrambled around.

He had to remain hooked up to the immunoglobulin drip for just over three hours, so nurses distracted him by handing him a tiny pumpkin to paint and decorate with Elmer's Glue and foam stars.

The next step in his treatment, Kleiner said, is a bone marrow transplant, which doctors hope to complete in the next month. The infusion acts as "a bridge to transplant," he added.

After that, Fluellen hopes, Jovon will recover enough that the regular hospital visits will eventually become a thing of the past.

She said she looks forward to when Jovon won't have to wear hospital bracelets on each wrist, like the ones that poked out under the red cuffs of his superhero costume as he bounced from the desk where he was painting his pumpkin to his mother's side.

"I still cry seeing him now," Fluellen said, as she bounced him on her lap. "We'll be glad when it's over soon."

(c)2017 Miami Herald

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