Home Delivery
  Digital Edition
  Mobile News
  RSS Feeds
  Local Forums

  Traffic Updates

Home » News » Story View ong>Layton mother of patient hopes to educate doctors, parents about checking for retinoblastoma

LAYTON -- Nine-month-old cancer fighter Lola Barkema's tumor is hidden in plain sight of the world.

Many photographs capture her healthy right pupil's rosy redness, while the left eye consistently flashes a foreboding white glint.

"There's this tumor blocking the back of her eye. What you're seeing in pictures is the tumor," mother Kelli Barkema said.

Despite the omen that appears on many of Lola's first pictures, Barkema said her pediatrician missed the warning sign at Lola's 3-month and 6-month wellness checks.

Worse than missing it, Barkema said, he didn't even look.

She's "a little bitter and upset" but said retinoblastoma is so rare -- it occurs in about 1 in 250,000 children -- it makes sense that doctors might forget to check for it.

"There's a part of me that says it's not his fault," she said.

Retinoblastoma is the same cancer that took former Jazz Player Derek Fisher out of Game 1 of the Western Conference semifinals last year. His infant daughter, Tatum, was diagnosed with the cancer and underwent surgery in May.

Barkema, a ophthalmology technician with a year and a half professional experience, said she worried her daughter was developing a lazy eye, but even she was unaware it was a warning sign of retinoblastoma.

Though rare, it is remarkably easy to screen for retinoblastoma. Usually light bounces off blood on the eye's retina, causing a red reflection, but a tumor blanches the reflection.

Doctors need only flash a light briefly into a child's eyes to detect the suspicious white eye.

Barkema wants to make sure doctors don't forget that simple screening mechanism.

"It's only recommended, it's not the law," Barkema said. "I want to change that. It's very rare, but so simple to detect. Pediatricians are supposed to be checking this during their well-care exam."

Lola is Kelli and Ken Barkema's second child and just received her third of six planned chemotherapy treatments.

Barkema said her job may have saved her child where other parents might not be as lucky.

She said she approached her pediatrician twice about what looked like a developing lazy eye, and each time, she said, he made her feel paranoid.

She started to take pictures of Lola purposefully trying to catch the eye in its lazy act, hoping the pictures might convince the doctor to look closer. Those pictures also often captured the white glint.

"I felt I wasn't being taken seriously by my pediatrician," Barkema said. "So I wanted to know if I was a justified paranoid mom."

Still hesitant, the pediatrician warned Barkema that a dilated-eye test would be necessary to diagnose the problem. Congenital cataracts and other diseases can also cause the white glint. The eye dilation would require general anesthesia for Lola and there are risks.

"The mommy gut feeling outweighed that," she said.

She took Lola to her boss, Dr. Robert Treft, at the Mountain View Eye Center in Layton.

"If I did not work where I do and our doctor had twice told me she's fine, I probably would not have taken her to a specialist."

Treft is glad she did.

"Anytime you have an infant or young person whose eyes do not line up or have an unequal red reflex ... they need to be seen by an ophthalmologist," he said. "It's not that often that we see this, but it is lifesaving if we treat it early."

Lola was diagnosed on a Friday, and that weekend the Barkemas had to consider two choices: They could treat the cancer to try to save Lola's eye or they could avoid the risk of letting the cancer spread by removing the eye entirely.

"He told us we might need to take the eye out that week so we immediately went and took family pictures," Barkema said.

Getting a last-minute studio session was not easy just three weeks before Christmas, she said, so finally she told a photographer the whole situation, urging 'I have to get this picture done!'<2009><2009>" The portraits are now in their living room.

The next week, Lola was seen at the Moran Eye Center at the University of Utah, where doctors looked more closely at the tumor.

There ited that the tumor was a safe distance from the ocular nerve, so Lola began chemotherapy.

Her prognosis is good. Lola is likely to survive, but remnants of the tumor may calcify and limit her vision. Barkema said Lola's young brain may be able to compensate for that partial loss of vision, but only time will tell.

Detection may have come just in time: Barkema said one doctor told her that the rapid growth of Lola's tumor without intervention could easily have spread in another two months.

Barkema said when Lola is healthier, she wants to set out on an education campaign among pediatricians and parents.

In 2000, Retinoblastoma International supported a California bill that now legally requires pediatricians in that state to check for child and infant eye tumors during wellness checks.

A charitable fund at America First Credit Union has been established for the Barkemas to help pay for Lola's medical bills.

Add Your Comment

Name:
Comment:
Security Code:	Type the characters to the left in the box exactly as they appear.

Sign up for local savings, special offers, deals and coupons!

E-mail Address:

View All »• Local Jobs