A place of their own

Jayla and Felicia Lee may share their toys and dress-up clothes. But when it comes to the “pink hospital,” each sister stakes her claim.

On a brilliant autumn afternoon, two little girls lie puddled in a patch of lawn, eyes sparkling, laughter buoyed aloft like a colorful balloon. Leaping to their feet, the sisters bound across the turf like happy puppies, running for no other reason than to feel the swirl of air across their skin, the warmth of sun on their faces.

Dashing along a sidewalk, Felicia Lee glances up at the maroon silhouette of a child emblazoned on a nearby sign. “That’s me!” she shouts, pointing at the logo for St. Jude Children’s Research Hospital.

The parents of Felicia and Jayla Lee respond with wry smiles. If the 5-year-old sees a resemblance to herself in the hospital’s logo, that’s perfectly understandable. After all, Felicia and her 6-year-old sister, Jayla, believe the hospital was created especially for them. And, of course, they’re exactly right.

Double trouble

Jayla and Felicia were both born with a genetic disorder called neurofibromatosis type 1, or NF1. Not only does the disorder cause tumors to grow on the nerves, but it also may cause heart problems, high blood pressure and developmental delays. A progressive disorder that occurs in about one in 3,000 to 4,000 Americans, NF1 is accompanied by a risk of optic pathway glioma, a tumor that occurs along the nerve that sends messages from the eye to the brain.

To monitor possible NF1 side effects, Frederick and his wife, Elnora, took their daughters for frequent checkups. During a routine appointment in June of 2008, an ophthalmologist jumped in surprise when she looked into Felicia’s eye.

“She pulled the machine away and just looked at me,” Elnora recalls. “She didn’t say anything at first. She just kind of breathed deeply.” Then the doctor uttered five ominous words: “I think I see something.”

The family immediately visited a neurosurgeon, who noticed a thickening on the optic nerve of Felicia’s sister, as well. The physician advised Frederick and Elnora to take both girls to St. Jude.

“My whole life changed in a split second,” Elnora recalls. “I thought, ‘Not one, but two? Are my children going to die? How much is this going to cost?’ In my mind, I was trying to figure out how much money we had in our bank accounts, because I knew that they would do MRIs and other expensive tests. We had insurance, but everyone knows that some things are not covered.”

Concerned about finances and reeling with shock, the couple took their daughters to St. Jude. As soon as possible, the Lees inquired about the cost. They were astounded when they learned that they would not have to empty their bank accounts to pay for treatment.

“They told us to relax—that we would have no out-of-pocket medical expenses. It was really overwhelming,” Elnora says. “It took a heavy weight off so that we could concentrate on our children.”

Treating the whole child

At first, the tempo was frenetic as Frederick and Elnora juggled numerous appointments and tests for the two girls. “We were running back and forth,” Elnora laughs. “My husband would be on one side of the hospital; I’d be on the other. Maybe we’d be able to meet for lunch; maybe not. But eventually it did smooth out.”

St. Jude oncologist Ibrahim Qaddoumi, MD, explained to the couple that an optic pathway glioma is not located in the eye itself. The optic pathway begins at the point where the optic nerve extends from the eye; the nerve passes through the eye canal, crossing to the other side of the brain, extending around the temporal lobe and ventricle all the way to the cortex.

“Kids with NF1 are at risk for malignancies—mostly brain tumors—and the vast majority of those are optic pathway gliomas,” he explains. “These children are even at high risk for some leukemia types. It’s a really complicated disease.”

Qaddoumi said that Felicia would receive about 18 months of chemotherapy for her brain tumors. Because Jayla’s condition was not as severe—she had a suspicious lesion on her optic nerve—she would undergo frequent testing.

Christine Odom, a genetic counselor at St. Jude, helped the Lees better understand the genetic aspects of neurofibromatosis. Because Frederick also has the disorder, the couple had a 50 percent chance of each of their children developing NF1. That is exactly what happened. Although Jayla and Felicia inherited the disorder, their oldest daughter, Daubre, and Felicia’s twin brother, Frederick Jr., were unaffected. “About 15 to 20 percent of children with NF1 will develop an optic pathway glioma,” Odom says. “Kids with NF1 are also at lifelong risk of developing other cancers, so they must receive regular checkups throughout their lives.”

Felicia has almost completed her chemotherapy regimen. Jayla undergoes testing every other month; thankfully her lesion has not developed into a tumor. At St. Jude the girls also receive physical therapy, speech therapy, occupational therapy and medications to offset the attention deficit disorder that is a hallmark of NF1.

“I worked with Jayla twice, but have worked with Felicia once a week,” says Allison James, a speech-language therapist in Rehabilitation Services. “Felicia and I worked on articulation, her language skills, and her ability to correctly formulate sentences and answer questions.”

As a former educator, Elnora appreciates the fact that St. Jude clinicians also educate the parents about their children’s condition. “It makes a difference that they take the time to talk to you and help you understand everything,” she observes.

Because an optic pathway glioma grows slowly, it is sometimes classified as a benign tumor, says Pediatric Nurse Practitioner Liz Burghen. Although the tumor does not spread to other areas of the body, it tends to affect the patient’s vision.

“Felicia does have some decreased vision, but it is minimal,” Burghen says. For that reason, Felicia receives regular checkups in the St. Jude Eye Clinic. Because the body’s hormones can also be affected by an optic pathway glioma, Felicia’s condition is also monitored by the hospital’s endocrinologists.

Parents helping parents

The Lees arrived at St. Jude three days after Elnora’s ordination as a minister. “I was ordained, and then: Boom. Here I am. I realized I couldn’t ask, ‘Why me?’ Instead, I said, ‘Why not me? Maybe I can help someone while I’m here.’”

Because she remembers the terror and uncertainty that she felt upon arrival at the hospital, Elnora is especially attuned to the stress that new families experience.

“She will actually notice new families and go talk to them on her own,” Burghen says. “The child may not have the same condition that her children have, but she will mentor the parents and give them advice on navigating the hospital.”

Elnora has noticed that when parents are overwhelmed, the child becomes anxious. “You can’t freak out, because it makes it worse for the child,” she says. “I try to help new parents understand that they need to be as positive as they can. That’s when your faith really steps in. That’s when you have to press through, say a little prayer and just get over it. The kids are watching you; they’re listening to everything you say. So by being positive, you help them to be positive, too.”

Elnora’s children seem to have inherited her optimism. Felicia and Jayla are known throughout St. Jude for their musical laughter, their energy, their enthusiastic embraces. “Felicia in particular is hilarious,” says Heather Bradley, RN. “And she travels at a run all the time.”

Like bees spreading pollen, the Lee girls distribute hugs throughout the hospital. Hugs for the security guards, the nurses and the cafeteria workers; for the photographers and the doctors and the therapists. If the girls can’t reach high enough, they are apt to hug staff members’ knees. “Felicia and Jayla are sweet, lovable and have the cutest smiles,” says Jackie Gilliam, who works in Assessment Triage. “It’s a pleasure to be a part of taking care of such wonderful girls.”

“They have more energy than the law allows,” Elnora responds with a grin.

Like typical sisters, Jayla and Felicia have a mercurial relationship—best friends one moment; competing for attention the next. “This is my hospital, not yours,” Felicia tells Jayla. “You just come here, but this is my hospital.” But Jayla knows the hospital was created especially for her.

And, of course, they’re both exactly right.

Reprinted from Promise Winter 2010

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