Hope in a needle.

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 second part in an occasional series about her.

Worn out after the procedure and the drugs, Chloe sleeps peacefully in Paul Fernandez's arms at Doernbecher Children's Hospital. She was slow to rouse after the treatment.

The Sunday started out as a day of anticipation and thanksgiving for Paul and Shellie Fernandez.

Their youngest daughter, Chloe, was scheduled for treatment to reduce a disfiguring tumor. Their church, family and friends had raised the money to pay the medical bills.

The day dawned sunny, with that crisp tang of fall in the air, and the family planned to attend the 10:45 a.m. service at Calvary Fellowship.

Paul, 25, and Shellie, 24, were getting 5-year-old Eleen, 2-year-old Luke and 1-year-old Chloe ready to leave when Shellie brushed against Chloe's face.

The normally mellow toddler screamed.

The apple-size tumor on her right cheek had swollen to almost twice its usual size. It was bright red and hot to the touch.

Scared, Shellie called the office of the Portland specialist working with her daughter, and the on-call doctor told her to head for the emergency room. Chloe's tumor had become infected, raising a worst-case specter of suffocation if it pushed into her throat.

Donors reach out to help

Chloe was born with a lymphatic malformation, sometimes called a cystic hygroma, a rare condition affecting just two or three children per 100,000.

The lymph system responsible for removing the cells' waste fluids has ballooned in her right cheek and neck. While the tumor poses a small risk to Chloe's overall health, her parents fear the emotional pain she'll experience as she grows up because of her looks.

While such tumors can be surgically removed, they sometimes grow back, and Chloe's tumor is intertwined with the nerves of her face, making surgical removal much riskier for her, her doctor says.

But Chloe has been approved to take part in a nationwide study of a treatment under review by the Food and Drug Administration.

The treatment involves injecting the tumor with a freeze-dried bacteria similar to the one that causes strep throat. Four series of injections spaced about six to eight weeks apart have been shown to shrink and sometimes completely eliminate tumors like Chloe's. The approach has been used successfully in Japan for more than a decade.

The Fernandezes asked for help to pay the estimated $34,000 cost of four injections. The state's insurance plan for low-income people doesn't cover the experimental procedure, and Paul Fernandez doesn't make enough as a welder for an RV maker to cover the expense.

Friends, family, church members, even complete strangers came through. Within a month, the Chloe Fernandez fund established at the church had climbed to $40,000.

Paul and Shellie were shocked at how quickly the money came in. They had expected that they might need a long-term fund-raising strategy. In retrospect, Shellie thinks people's natural inclination to help kids did the trick, but there's a touch of the divine at work, too, she said.

"I really think God put it in people's hearts to do this," she said.

The big day arrives

The Sunday - Oct. 26 - that Chloe's infection took hold, her parents rushed her to Sacred Heart Medical Center in Eugene, where she was injected with an antibiotic and sent home.

The infection was a disappointing setback: Would she be well enough for the experimental treatment that might shrink the tumor down to nothing?

Two days later at a pre-operation visit in Portland, the pediatric surgeon at Doernbecher Children's Hospital thought Chloe needed more time to heal.

"Discretion is the wiser part of valor," Dr. Henry Milczuk told the parents. "Let's wait." But back in Eugene, Chloe's infection worsened, and Milczuk - not wanting to take chances - had them bring her back to Doernbecher for a more intensive course of antibiotics. They kept her there two days.

Once again family and friends stepped in to help. Paul's grandmother, who had come from California to take care of the other children, stayed on, bunking with her great-grandkids in the family's tiny two-room house. And church members have provided dinners for the last two weeks.

That has freed Paul and Shellie to focus on Chloe, whose infection subsided enough this week to allow the treatment.

On Thursday, the family made the trip to Portland again, waking up at 4:30 a.m. on a fog-shrouded morning so they could be at Doernbecher by 8 a.m.

Waiting in a small curtained bay near the operating rooms, Paul held Chloe in a rocking chair, crooning the lullaby he wrote when she was born, while Shellie stroked her daughter's toes.

Two hours later, Dr. Milczuk arrived wearing blue operating room scrubs. He asked Shellie to sign one more consent form, told the couple that the procedure would take about 90 minutes and warned them to expect some redness, swelling, fever and puncture spots when Chloe came back.

Then the doctor, a nurse and the anesthesiologist escorted the family to the "kissing corner" just outside the surgery area. Chloe was duly kissed by her parents, then carried into an operating room and laid on a table where the anesthesiologist covered her face with a small mask that delivered a dose of paralyzing anesthesia.

She went limp, and the anesthesiologist quickly inserted a breathing tube down her throat that hooked to a ventilator forcing air into her lungs. A needle in a vein in her ankle kept fluids moving into her body because she hadn't had anything to eat or drink all morning.

Then nurses draped her with white sheets, covering everything but the tumor, and Milczuk stepped up to the table.

An ultrasound technologist placed a small probe alongside her cheek, and on the small black-and-white screen of the machine, Milczuk saw the dark space of a fluid-filled cyst. The tumor is composed of many such cysts.

He poked a thin needle into it, drew out about a tablespoon of lymph fluid the color of apple juice, then exchanged that syringe for one filled with the freeze-dried bacteria and carefully injected it.

The ultrasound probe moved, revealing another cyst, and Milczuk inserted the needle there, extracted more lymph fluid and injected more of the drug.

He repeated the procedure seven times.

"To effectively treat the cyst, we have to poke each one individually," Milczuk said after he'd finished. "Next time will be more like the same routine, depending on how she responds. Those seven areas we injected are done. There's several more, and we'll keep hunting for them."

A quick recovery

Chloe woke up in a crib 20 minutes later, disoriented and grumpy. She flipped over on her stomach, pulled herself up on her knees and let out a small squeal of frustration.

That's normal for children her age, recovery room nurse Bob Dembinski said.

"They work so hard to be able to do things," he said. "They come out disoriented, and they don't know it's a temporary thing."

Comforted first by Paul and then by Shellie, Chloe got her first drink of the day at 11:15, a glass of apple juice that she drank quickly.

Half an hour later, the family was back on the road headed south to Eugene.

On Friday morning, Chloe showed only one of the post-procedure symptoms Milczuk had warned the family to expect, some tenderness around the injection areas. But there was no redness, no swelling and no fever, Shellie said.

"It's much better than I had anticipated. She really has responded well," she said.

The next set of injections is scheduled for Dec. 10. It's possible they'll see a reduction in the tumor before then, Milczuk said.

The family expects to be in church this Sunday, Paul helping with the worship team, Shellie and kids among the congregation.

They'll be giving thanks, and not just to the almighty.

Tucked in the back of the car is a bag full of addressed envelopes and handmade thank-you notes, each with a flower, a star and a thin, gauzy ribbon. Almost 200 people helped Chloe, and each of them will be told they made a difference.

CAPTION(S):

Dr. Henry Milczuk checks an ultrasound monitor while guiding a needle into Chloe's cheek. The procedure involves removing the fluid from the various cysts in her tumor and replacing it with a bacteria that hopefully will reduce the swelling. The treatment has been successful in Japan. Above: Dr. Henry Milczuk gathers his thoughts at Doernbecher Children's Hospital after postponing a procedure due to an infection in Chloe's cheek. Left: Paul Fernandez cradles his daughter's feet before she is taken to the operating room. Kevin Clark / The Register-Guard Chloe Fernandez lies unconscious as doctors prepare to inject her cheek with a freeze-dried bacteria. It is hoped the procedure will reduce her tumor. Above: Shellie Fernandez made thank-you notes for the many church members and others who made donations toward Chloe's treatment. The help fund grew to $40,000 within a month. Left: A favorite toy bears the message of a loving parent. With the buildings of Oregon Health & Science University reflected in the car window, Chloe munches on crackers Thursday afternoon, her first solid food since Wednesday night. The family enjoyed an uneventful trip home from Portland to Eugene.