A reason to smile.

Byline: Susan Palmer The Register-Guard

EDITOR'S NOTE: Chloe Fernandez is one of about 150 patients nationwide undergoing an experimental treatment for a rare facial tumor. This is the third part in an occasional series about her.

Chloe Fernandez woke up Friday right at the time everyone wanted her out cold.

The blue-eyed toddler had slept through the early morning drive to Portland where she faced a magnetic resonance imaging scan of the tumor on her face.

And she drowsed in her mother Shellie's arms while they sat for two hours in the waiting area at Oregon Health & Science University's imaging lab.

She did wake up briefly and howled while a nurse inserted an IV needle with a single practiced slide into her tiny hand, but nodded right off when the combination of three sedating drugs hit her bloodstream.

And that's how doctors needed her for a while. MRI scans require patients to hold completely still so the images - cross-sections of the body - come out sharp and readable.

But once inside the massive scanner, a cube slightly larger than a Humvee, it was as though Chloe had put on her dancing shoes.

`She's awake,' said Lisa Schildmeyer, the nurse watching over her while MRI technician Mark Accardo pressed keys on a control console, selecting areas of Chloe's head and neck for scanning.

The single sharp image on the console monitor ghosted to several images as Chloe's feet kicked underneath the sheet covering her. Accardo had to scrap the pictures and start over.

Three times, she jostled on the table, and three times Schildmeyer added more sedating drugs through the IV needle.

Outside the dimly lit lab, Shellie and Paul Fernandez waited. The MRI pictures would tell Chloe's doctor, Henry Milczuk, whether she needed more injections to shrink the facial tumor she was born with.

It's been a rough three months for the Eugene child. Infections have plagued her since October, when she embarked on an experimental treatment that has helped children in Japan but has not yet been approved for use in the United States.

Some children with the rare lymphatic malformation, often called a cystic hygroma, have responded well to the treatment.

A surgeon extracts the lymph fluid in the cysts that make up the tumor and replaces it with a freeze-dried bacteria that shrinks the cysts. Sometimes the tumor gets smaller. In some cases, it completely disappears.

And that's what Shellie and Paul Fernandez hoped for when they learned that Chloe was a good candidate to participate in a national clinical trial of the drug in the United States, one that could lead to its approval for its use here.

While some children with the condition have many small cysts, Chloe has fewer large cysts, the kind that have responded best to the injections.

At almost 16 months, she's too young to fret about the tumor - which was apple-sized last October - but her parents want it gone. While such tumors are rarely life-threatening, they open up a child's life to the Pandora's box of being different from other children. Chloe's tumor is often the first thing people notice about her, her parents say.

She was scheduled for her first injection - a process that takes about an hour and requires anesthesia - in late October. But that's when the first infection hit, turning the tumor a swollen angry red and prompting the doctor to delay the procedure for a week while he treated her with antibiotics.

By Nov. 6, Chloe was well enough for the first experimental procedure, which went well, but included side effects of swelling and fever that lasted for several days.

Because of the previous infection, the swelling was much worse than they'd expected, Shellie said.

"Dr. Milczuk said it was normal for Chloe, because she was already inflamed," she said.

Her face grew so large, they had to cut her shirts at the neck in order to get them over her head.

"It was more sad than scary," Shellie said. "It was difficult to look at her. You no longer saw her face. You saw this tumor invading in her face."

Worse still, the infection returned. After battling it with oral antibiotics and injections, doctors inserted a PICC line, a special IV in a vein in her chest that would allow more frequent antibiotic doses.

By New Year's Eve, Chloe was well enough for the second treatment, which went well, but which was followed by another round of fever and swelling. Those side effects had just begun to ease when Chloe caught a cold that turned her face red and swollen again.

But when she recovered a little more than a week ago, her face seemed different.

Better.

The tumor not nearly so pronounced.

"At that point we started to notice a lot of improvement," Shellie said. It seemed that the tumor had shrunk.

The protocol for the treatment had called for up to four injections done at six- to eight-week intervals, but Milczuk, Chloe's doctor, suspected that he might have injected all her large cysts, meaning she'd need no more treatments.

He scheduled her for an MRI scan on Friday to take a closer look.

By 3 p.m. that day, the family was waiting in a small examination room for his verdict. Chloe, still dopey from the drugs, clung to Shellie while Paul entertained 2-year-old Luke, getting testy after a day of waiting rooms.

Milczuk didn't keep them waiting long. Sitting in front of Chloe, he examined the curve of her right cheek, felt along the still swollen edge of her lower jaw.

"I don't think we need more injections," he said.

The MRI pictures showed that Chloe's large cysts have been treated, he said, barring one small area where he wanted confirmation from a radiologist.

"I'm pretty happy," he said as he continued checking Chloe. "I'm glad she's not showing any signs of infection."

It could take as long as two years for the complete effects of the treatment to be seen, he said.

And Chloe isn't completely out of the woods. Another infection in the tumor area could cause it to swell up again. And that could trigger the need for another round of injections.

But on Saturday morning, with Chloe recovered from the sedatives and happily playing at home with Luke and her 5-year-old sister, Eleen, the worry seemed remote to Paul and Shellie.

"I'm optimistic, especially after talking to the doctor," Paul said. "We've noticed a difference in the last couple of weeks and seeing him confirmed how we were feeling."

Chloe's tumor is much less pronounced than it was last October, confined to swelling at her jaw and along her ear.

Paul hopes it will completely disappear in time.

"If it doesn't, it could affect her socially. It'll just be something she'll have to live with," he said.

"We're going to love her no matter what. Other people are going to like her because she has such a great personality. It'll be a quick test of the superficiality of who she's around if it bothers them," he said.

The couple said the response from the community to their daughter's condition has blown them away.

When they put out word in October that the Oregon Health Plan wouldn't pay for the treatment, family, friends and strangers stepped forward, contributing $40,000 to a foundation set up by the Calvary Fellowship, where the couple attend church.

"It's amazing to think people are so self-sacrificing and able to give away something they've worked hard for to help somebody else," Shellie said.

`One man even sent us $100 to go out to dinner on,' she said. The amount surprised the family, who live frugally on Paul's salary as a welder. `We thought, 'Who goes out to dinner for $100?' '

They haven't had to use all the money raised for Chloe's health care costs, but will keep access to it for at least another year in case further infection requires further doctor visits, Shellie said.

But if the tumor disappears, they'd like to help someone else with the leftover funds, she said.

"What's in our heart is to pass it on. We had a special need and we'd like to find a family out there where they have a special need, too," she said.

CAPTION(S):

A picture from the MRI shows Chloe's head and shoulders. On her left cheek, it's evident where some puffiness remains.