WILMINGTON – One local family has had their life flipped upside-down in just two months.
The Earley family’s youngest child, Clayton, who turns 2 in October, was diagnosed with retinoblastoma — cancer of the eye — the week of Father’s Day, said his father, Sean.
Retinoblastoma may first be detected simply by looking at photographs and checking for a white reflection in the eye, followed by a doctor’s exam. Almost immediately after doctors diagnosed Clayton with retinoblastoma, he underwent surgery to remove his eye.
The surgery he went through is called enucleation, said his mother, Jessica. During the surgery, doctors go in and remove the entire eye. During Clayton’s surgery, doctors removed his eye and part of his optic nerve. Then doctors put a plastic ball where Clayton’s eye used to be and put a clear lens on top of the eye.
The plastic ball was placed in Clayton’s eye socket just until a prosthetic eye could be made, which will look like a normal eye, Sean said.
“It’s not just an eyeball, ‘Pirates of the Caribbean’ (style),” he said.
Jessica and Sean said after they learned about Clayton’s cancer, they did not have time to process anything.
“We had seen, for awhile, a reflection in his right eye,” Jessica said. “I had kind of blown it off.”
Jessica was the only one who could see the white reflection in Clayton’s eye until right before they learned about the cancer.
One day when Sean was home, Jessica told him to take a look at Clayton’s eye.
“He saw it and he did a reflex test,” Jessica said. “Clayton didn’t even flinch.”
Sean assumed Clayton might have been blind in one eye, so when they took their son to Dr. David Brown, an optometrist in Wilmington, the parents were surprised.
“The world stopped turning,” Sean said.
For the first month, all MRIs, spinal taps and the surgery were done on an emergency basis, Sean said.
“What (doctors) were worried about with the optic nerve was brain cancer,” he said.
Doctors were able to remove the cancer in the eye and now Clayton is going through precautionary chemotherapy because the cancer might have spread past his optic nerve into the brain, Sean said.
“They said if we didn’t do the chemotherapy the chances of the cancer coming back somewhere else was basically a 50-50 chance,” Jessica said. “A 50-50 chance is just too much.”
Clayton will be done with chemotherapy in December and will hopefully be declared cancer-free, his parents said.
“It was pretty close within two weeks to a month of being a totally different story,” Sean said.
Even though Clayton is going through chemotherapy and has to be put under anesthesia for the MRIs, Jessica says Clayton doesn’t even realize what is going on and acts like a normal, happy, active 2-year-old.
“You would never know he had anything wrong with him,” she said.
When the Earleys learned about Clayton’s cancer, Jessica set up a Facebook page, “Clayton’s Journey”, to let family know how Clayton was doing.
Now, the Facebook page has more than 1,000 likes and the family is working to educate people on the cancer and the signs on how to find it.
Recently on social media, there have been photos of different children circulating with white reflections in their eye with a message to parents saying to be aware of the pictures they take and if they see the white reflection to consult a doctor.
Jessica had seen the pictures circulating online, but she never made the connection between the white reflections in the pictures and the white reflections in Clayton’s eye.
“When I take pictures of the kids I very rarely use a flash,” she said. “So I never noticed it.”
That test though was actually the first thing the doctor did when the Earleys took Clayton for a check-up.
After taking the picture Dr. Brown showed it to Jessica and told her red-eye in pictures in normal, but the white reflection is abnormal.
Recently, Jessica said she was looking through family pictures when she stumbled across some that were taken of Clayton right after he was born.
“Even at just one to two months old, I could see it,” Jessica said. “The whole time we were going through this we thought that … he’s had this since the beginning of the year. I think he’s had this since he was born but we just didn’t know.”
Clayton is the youngest of four children. He has three older sisters: Taryn, 6, Abi, 7, and Bella, 8.
“He and Daddy are buddies,” Jessica said.
Even though the Earleys have been focusing a lot on their son and his treatments, his siblings have not been hurt by the extra attention their brother is getting. Instead, they have jumped in to help their mom and dad out, but only after asking their parents a lot of questions.
“They’re over mothering now,” Sean said. “They’re very overprotective.”
Bella, Abi and Taryn are over mothering so much that they take turns watching their younger brother to make sure everything is OK when he is playing.
“He has a … reflective lens that he can actually take out and they’ll watch him and they’ll make sure he’s not messing with it,” Jessica said. “If it comes out, they bring it to us.”
Through social media, Jessica said she has been able to connect with other families whose children have retinoblastoma. She also has been able to help spread awareness of the cancer and educate parents on looking for it since kids do not go to the eye doctor until they are around 3 years old.
“There was a girl who sent me a picture of her baby who was about the same age and (the baby) had that abnormal reflection in the eyes and I said, ‘Just go get it checked out. It doesn’t take any time at all,’” Jessica said.
Jessica said the child ended up not having the cancer, but she said she is happy the Facebook page is spreading awareness of retinoblastoma.
One of the families whose child has retinoblastoma Jessica found through the Facebook page lives in New Zealand, she said.
“She contacted me through there and said, ‘My baby was born with the same thing,’” Jessica said.
While the retinoblastoma may be gone before Clayton can even remember he had it, the Facebook page will be there to show him what he endured as a toddler.
“It would be cool if Clayton and Mason (from New Zealand) could meet one day,” Jessica said.
The whole experience has changed the family forever, both Sean and Jessica said.
“We’re fortunate (and) very humbled,” Sean said.
The family has also re-prioritized to include advocation of childhood cancer awareness in their daily life.
“I was very concerned in working and running my business and making money and I was gone a lot,” Sean said. “Even though there’s things that still have to be done, you still have to take time.”
Early detection important
September is Childhood Cancer Awareness Month, and the Earleys will be part of the mayor’s golf outing Sept. 20 at the Elks Lodge. Wilmington Mayor Randy Riley is Clayton’s grandpa.
“The money is going toward childhood cancer,” Sean said. “Our other kids were hoping to get involved in a foundation. It’s all about education and early detection.”
Early detection is always important, Sean said, because kids don’t go to an eye doctor until later. If parents see the white reflection in their child’s eye, Sean urged parents to take their child to the pediatrician to get it checked out.
“The pediatrician may not know what it is, but at least the pediatrician can put you in the right direction as to what you need to do next,” he said. “Make sure you say something if you notice something.”
After Clayton finishes his chemotherapy in December, he should be deemed cancer-free. Just to make sure the cancer does not return, Clayton will have to go to the hospital for an MRI every six months.
“As he grows up he’ll be able to live a normal life,” Sean said.