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Swain family gets 'amazing' support after daughter diagnosed with eye cancer

Times West Virginian - 6/7/2017

June 07--FAIRMONT -- It was a normal Wednesday.

The Swain family was FaceTiming Matt Swain's mother when they noticed the eye of Bailey, their 6-month-old daughter, did not look right. Her pupil looked amber.

At first they thought it was just the the light from a lamp reflecting in the house.

But, the next day, when Matt came home from work, his wife, Emily, had been crying.

She said it had gotten worse.

She had looked up Bailey's symptoms on the internet, and her findings were not good.

One of the possible diagnoses was retinoblastoma, a rare eye cancer in children.

In the United States, only about 300 children a year are diagnosed with retinoblastoma.

"Thankfully, in the United States and highly developed countries, it is highly treatable," Emily said. "In

non-developed countries, the cancer can spread to the optic nerve and on to the brainstem.

"That was the part that was so scary. There were no symptoms. It was fine; then it was awful. There was no adjustment period."

The Swains took their daughter to West Virginia University, where the diagnoses was confirmed. It was retinoblastoma grade E, the largest tumor, so chemotherapy or cryotherapy were not options. The only option was total enucleation of the eye.

They were refer to Cleveland Clinic'sCole Eye Institute, where the diagnosis and treatment were confirmed. One day after she turned 7 months old, Bailey had her right eye removed.

"That was one of the things with her," Matt said. "If we didn't act fast enough, that would have gotten to the optic nerve."

As if dealing with a child with cancer was not stressful enough. the Swains had closed on their old house the day they got the diagnosis and tried to move into their new house in a week.

"Our friends rallied," Emily said. "We moved all the stuff from the house in one day. When we came back from Cleveland, our friends had put our house together. It was amazing. People are kind. People are good, and people are compassionate."

Not only did their friends and family move one house but also moved Emily's mom's things from storage to the new house.

"When we came home, our dressers were full of clothes," Matt said. "They put away food. They literally organized everything."

During all this, their older son, Jeffrey, stayed with his grandmothers.

He continued to do well in school, getting straight A's.

"Her brother has been very brave throughout," Emily said. "He has been a great support for Bailey."

"He is a very good kid and protective of her. He has been able to teach his friends how to be accepting and loving of people," Matt said. "He has done a great job. He is a great big brother."

Jeffrey is thankful that his little sister is OK.

"When she first came home I woke up in the middle of the night and was just sitting there for five hours," Jeffrey said.

A few months after having her eye removed, Bailey received an orbital implant that is surgically attached to her optic nerve. Then she was fitted with a prosthesis.

The prosthesis is polymer with a hand-painted iris. With the implant connected to the muscles, it allows the prosthesis to move similar to a normal eye.

Each year the prosthesis will have to be updated until she is 4 to 5 years old because her eye socket will continue to grow. As it grows the movement will reduce and could cause her to have facial drooping and atrophy of the muscles.

The family refers to her prosthesis as her special eye.

When Bailey's special eye has to be cleaned, Bailey cleans her doll baby's eyes with saline as well.

At age 2 she is aware of her "special eye".

"She is aware of it," Emily said. "I don't think she realizes that everyone doesn't have a special eye."

The family has done their best to explore all the options and give her a normal life. Since she only has one eye, her depth perception is off.

They are working with the organization West Virginia Birth to Three. Bailey has had developmental therapy and physical therapy and gas worked with a vision therapist from the West Virginia School for the Deaf and Blind to make sure she is tracking and aware of her surroundings and getting her to turn her head and look.

"I would like to give Birth to Three a major shout-out," Emily said. "They were amazing. They were a really good reference point for us. Just for them to say she is OK. These are the things to look for. We had no idea."

Bailey will have to have follow-up visits every six months in Cleveland until she is 4 to 5 years old. After that, if things are going well, she will go to once a year until she is 18.

The trips the family makes to Cleveland are more like family vacations than doctor appointments, stopping by Gray Wolf Lodge.

"It is sad to say, but it really puts things in perspective," Matt said. "It changed the way we parent. At work it changes my interactions with people because you don't know what battle they are facing. You treat everybody with respect, the way you want to be treated, because you never know if they would do that for Bailey. It is just being thankful for the little things in life because you don't know how quickly they can go away."

Email Tammy Shriver at tshriver@timeswv.com.

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