Mom Wants Awareness To Eye Cancer
WEIRTON – Missy Bowers Kosinski hopes some day her 3-year-old daughter Layla understands why her eye had to be removed – and that she forgives her mother.
”Sometimes I think she’s going to hate me one day for this,” Kosinski said.
Kosinski, a Weirton resident, recalls thinking her daughter was a little more clumsy than the average toddler. She also remembers noticing when her daughter would turn her head to the side, her eye seemed to be off from the other, and that she had trouble focusing them at the same time.
She asked others for their opinion, including her doctor, but no one seemed to see what she did. They dismissed it as a ”lazy eye.”
”You know your kids and when something is different,” she said.
Finally, one day last fall while Layla was in her bed, the light from the ceiling fan illuminated through her daughter’s right eye. Kosinski was horrified – she could see a small tumor inside Layla’s pupil.
”It was terrifying,” she said.
Her doctor, who did not agree with what she saw, referred her to an ophthalmologist for another opinion, and that doctor referred her to a retina specialist in Pittsburgh. After visiting that doctor, the family immediately traveled to Memorial Sloan-Kettering Cancer Center, New York City, to see another specialist who confirmed what she had researched online – that Layla had a rare form of cancer found only in children’s eyes called retinoblastoma.
”It was so fast. He said the eye needs to come out right now,” Kosinski said, noting that was at 10 a.m. and Layla’s eye surgery was booked for 2 p.m. the same day – on Oct. 31, 2012.
”I think I had three panic attacks that day,” she said, recalling how she felt while signing the surgery consent documents.
Since her diagnosis and surgery last October, Layla has been fitted with a prosthetic eye. When scar tissue formed behind the prosthesis it had to be surgically removed. That too was a trying time, at first, as Kosinksi and the doctors believed it may have been another tumor.
She also has had other tests to determine whether the cancer has spread, such as a bone marrow biopsy and spinal tap, and it has not.
Genetic testing revealed that Layla’s cancer was not sporadic but a genetic mutation. This means she has a 30 percent higher chance of developing other cancers in the future including melanoma, breast cancer and soft tissue sarcomas. She also could develop cancer in her other eye.
Layla – along with her mother and father, Paul, and often her siblings Taylor, 7, and Baylie, 1 – must travel to New York City about every four to six weeks for checkups. As Layla gets older, the trips are expected to be reduced to once a year, but not until she is about 10 years old, Kosinski said.
Kosinski said she is grateful for the support she’s received online, especially on a giving site called www.gofundme.com/3khrho. But what she really wants is for other parents to know about this disease and its symptoms.
”I want parents to be aware of this. If one child’s eye or eyesight gets saved, it’s worth putting it out there,” Kosinski said.
Another symptom of retinoblastoma is a condition called “cats eye,” which causes the cancerous pupil of the eye to glow much like an cat’s eye would when reflecting light. Kosinski said she noticed this only when her daughter was taking a bath.