Eagle-Eyed Mom, 33, Spots ‘Glow’ In Her Toddler’s Eye ‘As If He Had A Cat’s Eye:’ It Was Cancer

“Last summer, I started noticing a glow to his eye but it wasn’t very often at all and I kind of put it down to a light reflection,” she said. “Then I started to notice it a little bit more and we moved to a house, which had a lot more light and then I started noticing it more. It was a white glow over all his pupil, it was as if he had a cat’s eye.”

“When it started becoming more prominent and I was looking down at him I could see this white looking back at me, which now I know is the tumor in his eye. I’d mentioned it to my partner Gary who hadn’t seen it and we went a week and I was asking ‘can you see that? Come and have a look at that’ and then he started noticing.”

RELATED: 2-Year-Old Boy Diagnosed With Retinoblastoma After His Mother Noticed His Eyes Were Changing Colors; When Parents Should be Concerned

That’s when she and her fiancé, Gary Coyles, 36, went for advice from medical professionals. After being referred to a pediatric eye doctor, the couple was informed that their son had lost vision in his left eye. The doctor was also almost certain Cillian had a type of eye cancer called retinoblastoma. Two days later, Gary and Leonnie took Cillian to the hospital where several tests officially confirmed the diagnosis.

“I knew that it was something, but I would never have guessed that it would have been cancer,” Leonnie said. “So that obviously frightened the life out of me and I couldn’t sleep that night.”

For treatment, Cillian is now having targeted chemotherapy.

“The treatment shrinks and also calcifies the tumor,” Leonnie said. “It’s more than likely always going to be in his eye but it will be calcified and it kind of kills the tumor.”

But treatment has certainly not been easy. The chemotherapy has started to “toxify” the healthy part of his eye, so now doctors are treating that issue as well.

“When he was first diagnosed they talked about it being a rollercoaster,” Leonnie said. “And we didn’t quite understand what that meant until these past few months because it’s very much ups and downs.”

RELATED: 7-Year-Old in Georgia Diagnosed with Retinoblastoma After His Mom Noticed Something Unusual While Taking His Photo

But Cillian is apparently taking it all with a smile on his face. And in the meantime, the family created a JustGiving page to fundraise for the Childhood Eye Cancer Trust, and Leonnie is sharing Cillian’s story to inform other parents about “the glow.”

“If you see anything different with your child’s eye, you need to get it checked out,” she said. “If you notice something with your friend’s child’s eye or if you see a photo on Facebook, don’t be frightened to alert that parent.

“Because as a parent you would rather be scared for a week waiting for an appointment than it being too late and your child losing their eye or sight, or the cancer has spread. Every change in the eye doesn’t mean that it could be cancer but if we’d spotted and got Cillian checked sooner he could have potentially still had his sight in his left eye, we just don’t know.”

Understanding Cillian’s Type of Eye Cancer

The term eye cancer can refer to any cancer that originates in the eye. Melanoma is the most common type of eye cancer, but the kind that little Cillian has retinoblastoma happens to be is the most common type of eye cancer in children.

This cancer most often develops in infants and very young children, and it rarely occurs in children older than 6. Overall, retinoblastoma is rare, but it accounts for about 2 percent of all childhood cancers with about 200 to 300 children being diagnosed with the disease each year in the United States. About 75 percent of children with retinoblastoma have a tumor present in only one eye (making it unilateral retinoblastoma), but another 25 percent will have both eyes affected (making it bilateral retinoblastoma). And, thankfully, more than 9 out of 10 children in the United States with retinoblastoma are cured.

Retinoblastoma can be inherited, like we saw in the case above. Most children with retinoblastoma do not have a family history of the disease regardless of whether theirs is heritable or non-heritable but children with the heritable form have a 50 percent chance of eventually passing on the RB1 gene change that causes the tumor to their children. Children with the non-heritable form of retinoblastoma do not pass on an increased risk for developing the disease.

Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child's eye. Two of the more common signs and symptoms include:

• White pupillary reflex (leukocoria) the pupil appears white or pink instead of red when you shine a light in the eye
• Lazy eye (strabismus) the eyes don't appear to look in the same direction

Other less common signs and symptoms can be:

• Vision problems
• Eye pain
• Redness of the white part of the eye
• Bleeding in the front part of the eye
• Bulging of the eye
• A pupil that doesn't get smaller when exposed to bright light
• A different color in each iris (the colored part of the eye)

And if the cancer spreads outside the eye, symptoms can vary depending on where the cancer currently is. Symptoms for these scenarios can include:

• Loss of appetite and weight loss
• Headache
• Vomiting
• Lumps under the skin in the neck

It's important to note, however, that many of these signs and symptoms are more likely to be caused by something other than retinoblastoma. Even still, you should always bring up any of these symptoms to your child's doctor should they occur because the outlook for retinoblastoma patients is not as good if the cancer has had time to spread outside of the eye.

Advocating for Your Child

Here at SurvivorNet, we always encourage people to advocate for themselves when it comes to cancer and, more generally, health care. When it comes to a child, the parent must become the advocate just as we saw in the case above.

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And even if you're called 'pushy' or people dismiss the concerns you have for your child, it's important to remember that you never know when speaking up about a seemingly unproblematic issue can lead to a very important diagnosis cancer or otherwise.

"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Zuri Murell, director of the Cedars-Sinai Colorectal Cancer Center, told SurvivorNet in a previous interview. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."

Be Pushy, Be Your Own Advocate… Don't Settle

In a previous interview with SurvivorNet, April Knowles also talked about self advocacy and explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake. Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.

I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer

"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."

Figuring out whether or not you have or your child has cancer based on possible symptoms is critical because early detection may help with treatment and outcomes. Seeking multiple opinions is one way make sure you are or your child is getting the proper care and attention. You should also try to remember that not all doctors are in agreement. Recommendations for further testing or treatment options can vary, and sometimes it's essential to talk with multiple medical professionals.

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