WEIRTON At three years old Layla Kosinski has undergone surgery and the removal of an eye after being diagnosed with Retinoblastoma, and she still has a long fight ahead of her.
Layla's mother, Melissa Kosinski observed the symptoms in mid-October. Her first hint something was wrong was what appeared to be a lazy right eye.
"I thought she might need glasses," she said. "Nobody ever thinks there's cancer in your kid's eye."
About five days later, Melissa began to notice an odd sheen or glow in Layla's eye under certain conditions. She was alarmed when Layla looked up at a ceiling fan and Melissa actually saw the tumor in her daughter's pupil.
"It was almost like I was looking through a window and I could see the tumor in there," she said.
A search for symptoms on Google.com suggested the possibility of Retinoblastoma. Melissa took Layla to the pediatrician and shared her concern. However, the doctor was skeptical due to the rareness of this type of cancer.
Melissa then took her daughter to an ophthalmologist, who directed her to a retinal specialist. That examination confirmed the diagnosis.
Layla was referred to a New York City doctor at Memorial Sloan Kettering Cancer Center and the family embarked on the trip.
"This was Halloween and Hurricane Sandy had blown through. It was a mess. Half the city was out of power."
The doctor determined that surgery was necessary. She was scheduled for surgery that day. Her eye had to be removed.
"The tumor had 80 to 90 percent of Layla's eye and needed to come out immediately," Melissa said. "If we didn't get the eye out now, it could get to her brain. It could spread to her bloodstream."
They were able to take Layla home that day. However, the serious nature of the disease has called for thorough and strenuous follow up examinations. She had gone through bone marrow tests and has so far come through clear. She must go to New York every four to six weeks to have her eye scanned to ensure her left eye is in the clear.
This past February she was fitted for a prosthesis and it was found that the scar tissue was growing too fast and was pushing the impact out of place. A biopsy and more than two hours of surgery were necessary.
She was fitted with a prosthesis in April.
In the long term, Layla is at risk to develop cancer in her remaining eye until she is about 44 months old. In addition, her Retinoblastoma is of a mosaic form, existing in her blood cells. This genetic component means she will be at high risk of secondary cancers, soft tissue sarcomas, melanoma, and breast cancer. Healthy precautionary measures will form a large part of her life.
"She wears a lot of sun screen and eats organic products," Melissa said.
This type of cancer is very rare, with only 250 children per year diagnosed. Most cases involve children five years old or younger.
"A lot of times, parents realize something is wrong too late," she said, adding that the nature of the disease makes early diagnosis very difficult. The cancer starts in the retina, in the back of the eye, and comes forward. "You don't think ever that your child has cancer in the eye. By the time you see it, it's too late."
A fundraiser has been set up two weeks ago to help deal with the expenses. Melissa and Layla thank all those who support her.
"It's been really amazing," she said, adding that family, friends, friends of friends, and complete strangers have offered their help.
The site is at gofundme.com
"It's going to be a long road. We're taking it a step at a time," she said.
Melissa reminds parents to keep watch for the warning signs of such an ailment. She advises parents to schedule an ophthalmologist for an eye exam for their newborn. She said taking the child's picture in a dim room to get the 'red eye' effect. A warning sign can be observed if one eye is red and the other is white.
DeFrank can be reached at firstname.lastname@example.org