Twin Cities family shares warning sign for rare eye cancer

8:14 AM, Jun 11, 2013   |    comments
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SOUTH ST. PAUL, Minn. - When Theresa and Tim Nace took their infant daughter's photo, the glare from camera flash would give her red-eye in her left eye, but the other eye glowed white.

The white glow staring back in 18-month-old Adalyn's eye was the first sign of a rare childhood eye cancer called retinoblastoma.

"The thing about retinoblastoma that is different from other cancers is that you as a parent can potentially diagnose your child with it," said Theresa Nace. "Usually the parents are the ones that see the cancers before doctors see it. It's all by taking a standard picture of your child."

Adalyn was born with multiple health problems that included failure to thrive and suspicions of cerebral palsy as well as a metabolic disease.

Doctors encouraged a routine eye exam and that's when University of Minnesota pediatric ophthalmologist Dr. Jill Anderson discovered the cancerous tumor in Adalyn's right eye. She was 9-months-old.

"It usually occurs in kids that are under three years of age," said Anderson, "and it's potentially fatal if not treated."

Anderson says when parents take a photograph, the light reflects off the retina, which usually returns as an orange-like color.

"It's basically the red-eye in a photograph and so if that comes back and if you see white there instead of red, that is a concern," she said. "I have to say, trust your instincts.  I have had several parents say they knew something was wrong and it took a little while to get to the diagnosis. In retinoblastoma time, it matters a lot."

Anderson says 350 children in the United States are diagnosed with retinoblastoma each year. Survival rate is usually high here, but worldwide, of the 5,000 children diagnosed, only half survive. She says routine eye exams for young children under age three cannot always catch signs of retinoblastoma because it presents so suddenly and progresses so quickly.

The Know the Glow Foundation says the white glow from a camera flash can be an indicator of 15 eye diseases and cancers, including retinoblastoma.

When Theresa Nace learned this rare cancer could be diagnosed in a photo, she looked back at her photographs and saw what she refers to as that "cat-eye" glow. She warns parents keep the camera's red eye filter off to accurately see the glow.

"We went through the whole guilt we looked back for four months, and didn't even know. If there is a way I can let other parents know, especially children under five, it doesn't cause any pain. Just take a picture or look back at your pictures," said Nace.

Adalyn's tumor could not be removed so her treatment required six difficult months of chemotherapy.

"It was finally, when she started losing all her hair and starting to get sick, when I realized, 'Oh my gosh, my child actually has cancer.' And that's when it really hit. When we found out she had the genetic form of retinoblastoma, it was kind of another sucker punch to the gut," said Nace.

Nace says a genetic form of retinoblastoma puts Adalyn at risk of developing other cancers for the rest of her life. She's also dealing with side effects from chemotherapy which includes progressive hearing loss and delayed speech, but she is in remission and doing well.

"She's stayed extremely happy through it all. Right now she is just living life like she should," said Nace.

The Naces have two other children who have tested negative for the same genetic retinoblastoma.

A weekend benefit at the South St. Paul VFW Post 295 will help the Nace family with Adalyn's medical bills. It will be held on Saturday, June 15 from 12 to 4 p.m. It includes a silent auction, meat raffle and bake sale. Cost is $12 a person.

Learn more about Adalyn and retinoblastoma on her Facebook or Caringbridge site.

Families seeking help screening infants can find resources at InfantSEE. The organization says even if no eye or vision problems are apparent, the American Optometric Association recommends scheduling your baby's first eye assessment at 6 months.

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