Juliet's Journey: Life with benign but disfiguring tumor

Galveston, Texas - The girl in the hotel pool stops playing. She looks at my daughter and me as we ease into the water, her nose scrunched and head cocked. Juliet is too young to notice, and I try to ignore the stare.

"She's just curious," I tell myself. "She doesn't know any better." The girl wades over to her dad, who sits on the steps with a beer.

"Daddy, what's wrong with her?" she asks, assuming I'm out of earshot. "I don't know," he says.

The girl wants to know why Juliet's lip is the size of a large grape, discolored and misshapen. She's puzzled by the massive growth of pink and white tissue that has overtaken the 2-year-old's ear, her left cheek and her neck. I could tell them. I could explain it is a hemangioma, a common but little understood birthmark - or, more accurately, a benign tumor, a vascular neoplasm, a mass of blood vessels.

I could talk about the lasers Juliet endured as a baby that left her sores smoking, or discuss the multiple reconstructive surgeries ahead of her. I could tell them how the hemangioma brought us here from Colorado to see a plastic surgeon at Shriners Hospital.

I could rattle off the statistics and an assortment of hemangioma trivia. I don't. The girl just wants to know why Juliet isn't like her.

As a health reporter, I know things could be worse. Much worse. There are children dying of tumors with nothing benign about them. Organs fail. Car crashes paralyze and children fall from second-story windows. Flames and scalding liquids burn children beyond recognition.

Still, today at the pool, I can't help thinking: This is my kid that children are staring at and talking about in poorly concealed whispers.

I focus on Juliet's smile as she hangs from her bird floaty with the squeaky beak. Her wide eyes gleam and her tow-head hair is almost blinding in the sun. The hemangioma is invisible to me. I just wish it were to everyone else.

A 10-letter word

Juliet's entrance to the world was quick and uncomplicated, as was her mother's pregnancy. Born at 10:36 p.m. on March 8, 2006, she was healthy and amazing.

A couple of weeks later, what appeared to be a rash formed on her ear and face. It crept across her ear and down inside it. It crawled across her left cheek and down her neck as it continued to darken and swell. Her lip also became swollen and discolored. The growth was astounding, noticeable overnight at times. What kind of rash was this?

At ABC Pediatrics, Dr. John Leopold diagnosed it not as a rash, but a tumorous birthmark. A dermatologist next door confirmed it. Ironic, I thought, that a "birthmark" would come weeks after her birth.

And, to underscore that irony, the dermatologist informed us it wasn't done yet.

We turned to Google and what we found was staggering. We saw children with their entire faces masked by the growth, unable to see or smell, and seemingly baseball-size masses on toddlers and infants. In rare cases, we learned, the tumors are associated with abnormalities in organs such as the brain, lungs or heart, causing serious health problems. It's called PHACES syndrome, and the hemangioma is its manifestation.

A mystery

Hemangiomas are more common than I would have imagined. They're said to occur in 4 to 10 percent of all infants, most commonly in fair-skinned girls. All of them grow, then shrink. Many are small even at their peak and go away without a trace. But, as we've learned, many don't. They leave doughy, sagging skin in their place and require surgery to repair.

Little is known about them beyond this. There is no known cause. There is no predictor of how much they'll grow or how quickly they'll shrink. Opinions vary on how to treat them. Some doctors recommend doing nothing at all; others believe in early intervention.

Dr. Joyce Bischoff, an associate professor at Harvard Medical School and researcher for The Children's Hospital Boston, is one of just a few people actively researching hemangiomas.

The tumors may hold keys to major medical mysteries, she said, because they are unique in their here-todaygone-tomorrow behavior. But that same characteristic is why research is hard to come by. Finding tissue samples is tough when they are seldom removed.

Donning the goggles

A few weeks after Juliet was diagnosed, she awoke screaming in pain. She was covered in blood. We assumed at first it was from scratching the tender tissue at her face, but more sores soon surfaced.

She was one in 10,000 children with a hemangioma that, for no clear reason, ulcerates. Her lip turned into a wide-open sore, leaving us to feed her milk in a syringe, one milliliter at a time as she wailed. As many as a dozen painful wounds sprouted across her cheek and neck.

About once a month, we'd travel to Children's Hospital in Denver to visit Dr. Joseph Morelli, a pediatric dermatologist.

In what became a ritual, we'd all don thick goggles as a fierce blue beam zapped the sores, leaving our baby screaming. The ulcers, he explained, don't heal on their own. They need a new wound to jumpstart the body to heal. Each one left a white scar, another patch on this strange biological quilt.

No Man's Land

Unlike so many people whose children are critically ill or have debilitating conditions, we have comfort in knowing that the hemangioma is not life-threatening, and it dies a little more each day. With the sores no longer occurring, our happy toddler is blissfully unaware of the pain she once endured or her parents' worries over what's ahead.

Most days we're just another family.

A few days we're reminded we're not. "Look at that weird girl! Hey, look at that weird girl!" a girl said about Juliet one time when she was playing. Once, while shopping, a mother and daughter approached the stroller to look at the baby. When they saw Juliet, their smiles vanished and the mother hurried her daughter away without speaking.

So in Galveston, on a scorching day by a crowded pool, the little girl's comment is not unusual, nor is her stare malicious.

The context, though, has changed.

We came here to visit Shriners Hospital for Children. Twenty-two such hospitals across the country specialize in treating burns, orthopedic defects, cleft palates and other maladies in children.

The Galveston hospital specializes in burns but also treats hemangiomas. Treatment is free.

The local temple, Al Kaly, has screened Juliet, and she's been accepted here for an appointment with the chief of plastic surgery. Our list of questions is lengthy: How soon until surgery? How many of them? How complicated? What can we do to prepare - stockpile our blood for Juliet? Homeschool her during her hospital stay?

Dr. Robert McCauley's assessment was unexpected. Wait, he said, until she's 12.

A decade.

Juliet would have to carry this into adolescence? As if the first year of middle school isn't traumatic enough in its own right, our daughter will face major - and likely complicated - reconstructive surgery. Four to five operations, he estimated. There will be permanent scarring.

We came in search of answers. We left with more questions, but our quest isn't over; the plan all along was to get a second opinion, maybe a third.

Perhaps other doctors will bring better news. Perhaps it will be worse. And if opinions do vary, which will be best for her?

In the pool, watching the delight in her face, I want to freeze time. I'll take the dirty diapers, the temper tantrums.

Those amusing three-word sentences, the ones where P's are mistaken for C's will eventually be gone. Soon enough, there will be serious conversations to explain the unknown and potentially long road ahead.

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Contact the writer: 636-0198 or brian.newsome@gazette.com