When you look at this photo of Lily Morss, she looks like any other noisy toddler.
But it was actually one of the first signs that a cancerous tumor was pressing against the little girl’s left eye.
It was around this time, about seven months ago, that Lily’s parents became concerned that her eye was slightly swollen and drooping.
The family of six from Arkansas took her to the pediatrician several times, who said the subtle eye changes were nothing to worry about, and attributed it to a harmless insect bite that would go away on its own or a simple quirk.
But her eye became increasingly swollen and droopy, and Lily squinted more and more. Then she became irritable and fussy. Eventually her eye swelled to the size of a golf ball.
The 14-month-old baby was diagnosed with retinoblastoma last month, which is believed to have caused her agonizing pain and vision problems.
Looking back, her parents told DailyMail.com that the diagnosis would explain other signs that something was wrong besides her swollen eye.
She tilted her head, as if trying to see better with her right eye. She cried and buried her head in her mother’s lap.
The Morss said they noticed that Lily would sometimes squint her eyes or tilt her head to see better with her right eye.
Her father told DailyMail.com: ‘Her left eye was very enlarged and we told her pediatrician at least six times. But retinoblastoma is so rare that they probably aren’t educated enough to know what it is.
‘I can’t blame them because I’m sure they didn’t know it was cancer. I mean, she’s a bubbly girl.’
The family’s ordeal began in December, just seven days before Christmas.
Lily’s eye had become increasingly swollen, to the point where her parents became seriously concerned.
Her mother said she didn’t want to open her eyes at all. Her parents called the pediatrician and made an appointment to have her examined.
When they explained the situation on the phone, they were told it was probably just teething, that her mouth hurt and she was trying to cope with the discomfort.
It was clear that she was in a lot of pain but couldn’t express it to them.
They noticed severe swelling late on December 18 and rushed to the hospital near their home in Paragould, Arkansas.
Doctors performed blood tests and a CT scan.
Mr Morss said: ‘They came back within 30 minutes and said, there’s something in her eye. We’re going to have to call a pediatric ophthalmologist, and that’s rare, and we’re going to have to take her somewhere.”
Lily is pictured in St Jude’s. There, her parents learned that a tumor the size of a golf ball was pressing on her left eye, which needed to be removed
‘First the doctors told her to go to Bonner Children’s Hospital.
‘And then I’d say, probably another 30 minutes, [they said] “You’re going to have to go home and get an overnight bag because we have her room,” and as soon as they said it was St. Jude, I knew exactly what it was.”
She was rushed later that morning to St Jude’s Children’s Hospital, a leading pediatric cancer center in Memphis, Tennessee, where doctors decided they needed to remove her left eye, which had died under the weight of a massive tumor there.
During eye removal surgery, the surgeon begins by making incisions around the conjunctiva, the membrane that covers the white of the eye.
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The extraocular muscles, which control eye movement, are gently released. The optic nerve is then cut to remove the eyeball.
The conjunctiva is then sewn closed over the implant that is placed in the socket to maintain its shape. Finally, a pressure bandage may be applied to minimize swelling and promote healing.
After doctors removed her eye, the Morsses told DailyMail.com: ‘She was jumping up and down, bubbly, happy. She was completely herself again.’
Doctors also found two smaller tumors in her right eye. The case of blastoma in both eyes is due to a genetic mutation in a tumor suppressor gene in both eyes.
The defect in the gene predisposes cells in both retinas to developing additional mutations that cause uncontrolled cell growth, leading to tumor formation.
Lily’s father Josh told DailyMail.com that he believes Lily lost the sight in her left eye months ago and was in pain she couldn’t verbalize
About 300 children are diagnosed with retinoblastoma in the U.S. each year, and the aggressive cancer can be fatal if left untreated.
However, thanks to advances in highly individualized chemotherapy, this treatment now has one of the highest cure rates of all childhood cancers: 95 to 98 percent.
Lily’s left eye is now sewn shut. In about a month she will receive a prosthesis that resembles a real eye.
The family is about to begin the second of six rounds of chemotherapy to shrink the tumors in Lily’s right eye and will travel back and forth to Memphis until the end of April or until doctors can say for certain that her right eye is healthy.
Mrs Morss said: ‘Because there are several tumors in her other eye we will have to do the chemo so we can reduce them and laser them away.’
The tumors in Lily’s right eye are further away from her retina and smaller, putting less pressure on the optic nerve and causing much less pain.
According to her parents, she is cheerful during the chemo treatments. But then she becomes nauseous, pale and tired.
Mr Morss told DailyMail.com: ‘This girl is a Disney and Miss Rachel fanatic. I think that’s what really keeps her calm.”
Lily, pictured with her mother Casie, has a long road ahead, including five more chemo treatments in four months
He added: “Minnie goes over there and starts doing her little boutique thing [on her cartoon show]and Lily just bounces and jumps for joy.”
The entire Morss family – Josh, Casie, Lilly and their four sons – will remain close together until Lily’s chemotherapy ends in April.
The Morss’ four sons, who are homeschooled, are very protective of their sister.
The fact that the boys are homeschooled makes it easier to uproot the family, but the change in routine still takes its toll on them. In the meantime, the Morsses are unable to work and rely on donations from Good Samaritan their GoFundMe page.
Mrs Morss said: ‘Our five-year-old has been Superman. He wants to make sure she’s taken care of, and if she starts whining or whining, he runs over to see if she’s okay.”
Mr Morss added: ‘He basically told us, ‘Why are they looking at Lily? She can have mine. I don’t want it anymore.’