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Looking at this photo of Lily Morss, she looks like any other boisterous toddler.
But it was actually one of the first signs a cancerous tumor was pressing against the little girl’s left eye.
It was around this time, about seven months ago, Lily’s parents grew concerned her eye was somewhat swollen and droopy.
The family-of-six from Arkansas took her to the pediatrician several times who said the subtle eye changes were nothing to worry about, chalking it up to a harmless bug bite that would resolve on its own or a simple quirk.
But her eye became progressively swollen and droopy, and Lily was increasingly squinting. Then, she became irritable and fussy. Eventually, her eye swelled to the size of a golf ball.
The 14-month-old was diagnosed with retinoblastoma last month, which had likely been causing her agonizing pain and vision problems.
Looking back, her parents told DailyMail.com the diagnosis would explain other signs that something was wrong in addition to her swollen eye.
She would tilt her head to one side, as if to better see from her right eye. She would cry and bury her head in her mother’s lap.
The Morss said they had noticed Lily would squint sometimes, or tilt her head to see better out of her right eye
Her father told DailyMail.com: ‘Her left eye was very enlarged, and we brought it up to her pediatrician at least six times. But retinoblastoma is so rare that they probably weren’t educated enough to know what it is.
‘I can’t fault them for that, because I’m sure they didn’t know it was cancer. I mean, she’s a bubbly little girl.’
The family’s ordeal began in December, just seven days before Christmas.
Lily’s eye had gotten progressively more swollen to the point where her parents became extremely concerned.
Her mother said she wouldn’t open her eyes at all. Her parents called the pediatrician and scheduled an appointment to have her checked.
When they explained the situation over the phone, they were told it was likely just teething — that her mouth was hurting, and she was trying to work through the discomfort.
It was clear she was in significant 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 those are very rare to come by, and we’re gonna have to get her somewhere.’
Lily is pictured at St Jude’s. It was there that her parents learned that a golf ball-sized tumor was pressing on her left eye, which would have to be removed
‘First, doctors said she needed to go to Bonner Children’s Hospital.
‘And then I’d say, probably 30 more minutes, [they said] “you’re gonna have to go home and get an overnight bag, because we got her room,” and as soon as they said it was St Jude, I knew exactly what it was.’
She was rushed to St Jude’s Children’s Hospital – a top children’s cancer center in Memphis, Tennessee – later that morning, where doctors determined they had 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.
The extraocular muscles, which control eye movement, are carefully detached. The optic nerve is then severed to remove the eyeball.
Afterward, the conjunctiva is stitched closed over the implant that is placed in the socket to maintain its shape. Finally, a pressure dressing may be applied to help 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 back to herself.’
Doctors also found two smaller tumors in her right eye. The instance of blastoma in both eyes results from a genetic mutation in a tumor suppressor gene in both eyes.
The defect in the gene predisposes cells in both retinas to develop additional mutations that cause unchecked cell growth, which leads to tumor formation.
Lily’s father Josh told DailyMail.com that he believes Lily lost sight in her left eye months ago and was in pain that she couldn’t verbalize
Around 300 children are diagnosed with retinoblastoma in the US each year and the aggressive cancer can be deadly if left untreated.
However, thanks to advances in highly individualized chemotherapy, it now has one of the highest cure rates of all childhood cancers at 95 to 98 percent.
Lily’s left eye is now sewn shut. In about a month, she will be fitted for a prosthetic made to look like a real eye.
About to start the second of six rounds of chemotherapy to shrink the tumors in Lily’s right eye, the family will travel back and forth to Memphis until late April or until doctors can say for certain her right eye is healthy.
Mrs Morss said: ‘With there being multiple tumors in her other eye, we will have to do the chemo, just so we can shrink those and laser them off.’
The tumors in Lily’s right eye are further from her retina and smaller, putting less pressure on the optic nerve and causing much less pain.
According to her parents, her spirits are high during chemo treatments. Afterwards, though, she becomes nauseated, pale, and tired.
Mr Morss told DailyMail.com: ‘This girl is a Disney and Miss Rachel fanatic. I think that’s what’s really keeping her calm.’
Lily, pictured with her mother Casie, has a long road ahead of her, including five more chemo treatments over four months
He added: ‘Minnie goes on there, and she starts doing her little boutique thing [on her cartoon show], and Lily’s just bouncing and jumping for joy.’
The entire Morss family — Josh, Casie, Lilly, and their four sons — will stay close together until Lily’s chemo ends in April.
The Morss’ four sons, who are homeschooled, are very protective of their sister.
The fact that the boys have been homeschooled makes uprooting the family easier, but the change in routine still takes a toll on them. In the meantime, the Morsses can’t work and are relying on Good Samaritan donations to their GoFundMe page.
Mrs Morss said: ‘Our five-year-old has been Superman. He wants to make sure that she’s taken care of, and if she starts to whimper or whine, he runs to her to make sure she’s okay.’
Mr Morss added: ‘He actually told us, “Why are they taking Lily’s eye? She can have mine. I don’t want it anymore.”’