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Infant, family in fight of their lives against rare eye cancer

RIVERVIEW — The pediatrician didn't notice the tumor in Rowan Santos' eye.

Even though, as an infant, she received eye exams and had regular checkups, no one saw the growing white mass that would soon take up about 70 percent of her left eye.

Then, in July, when Rowan was 11 months old, Megan Santos noticed that one of her daughter's eyes was changing color. She posted a note on the mother networking Web site Babyfit.com under the heading "2 different eye colors."

That's when Madeleine Robb, who lives in England, wrote back. She wanted to see a picture.

In the photo Megan Santos posted, Rowan's left eye had a glare that resembled red eye, only it was white. Robb thought she knew what that meant: cancer.

She wrote Megan, telling her to not worry, but to get it checked out. The next day, Megan Santos had an appointment with their new pediatrician in Riverview.

The doctor noticed the difference and immediately called pediatric optometrist Dr. Derek Hess, of St. Petersburg, who sent them for an MRI and CT scan that day.

As they waited for the results, Marc Santos faced the fact that Rowan, their only child, could die. Megan Santos refused to agree.

The results came back that evening. Rowan had retinoblastoma, a rare eye cancer that can spread to the brain if detected too late. It can be fatal.

Hess scheduled them to see one of seven eye cancer specialists in the nation the next Monday. Megan and Marc Santos wanted to drive to see Dr. Timothy Murray in Miami that day, but they had to wait through the weekend.

"It was a horrible weekend" Megan Santos said. "We had to tell the family."

Murray confirmed their worst fears, but had good news. He was hopeful it hadn't reached the optic nerve. With chemotherapy, laser surgeries and the removal of her eye, she would probably be cancer-free.

Rowan's first round of chemotherapy was on her birthday, Aug. 20. They stayed in the hospital, where Rowan learned to distrust women because she doesn't like nurses. She became wary of strangers.

She just finished her second round of chemotherapy, an exhausting process because she doesn't sleep in the hospital next to the beeping machines. The crib is like a cage, and Rowan just learned to walk.

"She wants to explore," Megan Santos said.

So Santos and her husband are up all night, watching the children's show The Wiggles, which Rowan loves. She also likes it when her dad holds her and sings to her.

"She likes his big, broad chest and his deep voice," Megan Santos said.

At home, Rowan is a normal child. She loves her Winnie the Pooh and Mickey Mouse dolls. She dances to music and she watches her Elmo sing-a-long DVD.

The only difference is she can't have visitors. Her immune system is suffering from the chemotherapy, and she's already been hospitalized for one infection.

When Marc Santos returns home from work, he washes his hands and changes. He'll sometimes shower before playing with his daughter.

Rowan will have her eye removed in November, something her mom is trying not to think about. But Megan Santos would rather have the cancer gone than keep the eye. Prosthetic eyes are getting even more realistic, she said.

Still, she's saving copies of all the medical records and hospital bracelets. She's keeping a blog of their fight with cancer so one day she'll be able to explain to Rowan why they decided to remove her eye.

"So she never says, 'I hate you for making that decision,' " Megan Santos said.

Jessica Vander Velde can be reached at jvandervelde@sptimes.com or 661-2443.

>>Want to help?

Donate to Rowan's care:

Visit www.rowansantos.com to give online.

For information on retinoblastoma:

www.retinoblastoma.net

For information on children's eye health:

www.infantsee.com

Infant, family in fight of their lives against rare eye cancer 10/02/08 [Last modified: Tuesday, October 7, 2008 11:59am]
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