Twins diagnosed with same rare eye cancer as newborns: ‘Tomorrow is not promised’

Twins diagnosed with same rare eye cancer as newborns: ‘Tomorrow is not promised’

At just 10 days old, Eve Oakley experienced a medical crisis, underwent emergency surgery and spent about six months in hospital. During an eye examination, the doctor noticed tumors in Eva’s eye. She was diagnosed retinoblastoma, retinal cancer. A few days later, Ella, Eva’s twin, was diagnosed with the same cancer.

The Oakley family has faced many challenges as their twins, now 4, continue to live with cancer on and off, but they want to raise awareness and offer optimism to others.

“I live a life of hope for them, and I live a life (knowing) that tomorrow is not promised,” Maryann Oakley, 43, of Marysville, Pennsylvania, told TODAY. “I create memories for them as much as possible because I feel like I’ve wasted a lot of time. … But in between those scary times, it’s just making sure they’re happy.”

A surprising twin pregnancy and a terrifying diagnosis

When Maryann Oakley was pregnant, she and her husband were stunned to learn she was carrying fraternal twins. At one point it seemed that only one twin would survive, but both developed and the pregnancy seemed healthy at the time. At 37 weeks pregnant, Oakley gave birth to the girls by caesarean section.

“They only stayed in the hospital for about three days. They were about 5 pounds when they were born and they were jaundiced,” Oakley recalled. “We thought that was the hardest part.”

Around New Year 2017, about 10 days after the girls were born, Eve started behaving strangely.

“She wasn’t eating, she was just screaming,” her mom recalled. “We just knew something was wrong.”

They took Eva to a local hospital, where her vital signs dropped and her skin turned gray. The staff started rushing to treat her.

“They thought it was meningitis,” Oakley said. “She was connected to a million things. She just cried in this pain. It wasn’t like a normal baby.”

The next day, doctors performed exploratory surgery on her and discovered that she had a twisted intestine, which was the cause of her symptoms. Doctors removed part of her intestine and created a stoma, an opening in the body that allows feces to pass into an external bag. While Eva was recovering, she entered heart attack.

“Everything was so foggy. It was scary,” Oakley said. “They used these drugs, trying to bring her back. I could hear them screaming, ‘Give her more. Give her more, trying to heal her.”

Soon after, Eve went into septic shock, her kidneys and liver failed, and she was urinating blood. He started having seizures.

During a dilated eye exam, doctors noticed tumors in her left eye, a sign of retinoblastoma, where cancer cells form in retinal tissue.

Retinoblastoma is the most common type of eye cancer in children, representing 2% of all childhood cancers. according to the American Cancer Society. Only 200 to 300 pediatric cases are diagnosed each year. Infants and young children are most likely to get it, and it is rare in children older than 6 years. About 90% of American children with retinoblastoma are cured, but this statistic drops if the cancer spreads outside the eye. Retinoblastoma can lead to blindness and other vision problems.

Finding the right care

The hospital Eve was in didn’t specialize in retinoblastoma, but she needed to be stable before being sent elsewhere. Meanwhile, the doctors recommended that Ella be examined as well.

“Eli was diagnosed (with retinoblastoma) probably just a few days after Eve,” Oakley said. “There (was) a lot going on.”

A twin diagnosed with cancer increases the likelihood that the other will develop the same or a different type of cancer, a 2016 study in JAMA found. The risk is higher in identical twins than in fraternal twins. The study looked at data on 3,316 sets of twins who both developed cancer; of these, 38% of identical twins and 26% of fraternal twins developed the same cancer.

Ella immediately began chemotherapy at the Children’s Hospital of Philadelphia. When Eva was strong enough, she was taken to the hospital so that when she recovered, she too could begin chemotherapy. Oakley struggled to understand that both of her newborn daughters had cancer.

“It all went by so fast,” she said. “Just try to get the best treatment.”

Eva’s health was more precarious, so she stayed in the hospital, a two and a half hour drive from home, while Ela went for outpatient treatment. Eve was on life support for a while, and her parents took turns caring for her or her sister. Every day, either mom or dad stayed at the hospital with Eva; the other took Ella on dates.

Eventually, Ella began to experience side effects from chemotherapy.

“She was sick from her first round of chemotherapy. Every time she moved, it would be like screaming. It’s horrible,” Oakley said. “Ella was sick in her first round for six days.”

When Eva started chemotherapy, she got sick, as did Ella, but because she was patient, it was easier to endure. However, she endured several infections and a blood clot.

More health challenges

By June 2018, both girls were home and had completed treatment. But in August 2018, Ella called again. “It was a small tumor. They were able to cure it with laser radiation therapy,” Oakley said. “That was good.”

Although Ella has been stable since August 2018, she is considered a “high risk of recurrence” because retinoblastoma develops as the eyes grow, Oakley explained. Ella still has “small” tumors in both eyes, but they have shrunk with treatment, so the family hopes they are “dead”.

Also around the summer of 2018, Eve had her bowels reattached so she no longer needed a stoma. To this day, she has short bowel syndrome and a vitamin deficiency as a result, and her blood pressure remains “dangerously high” because she experienced kidney failure, Oakley said. Eva’s kidneys still need time to heal.

The family was thrown another curveball when Eve relapsed in March 2022. She was treated, but relapsed again in November 2022 and began cryotherapy, a treatment that uses extreme cold to destroy cancer cells, according to Cancer Research UK. The Oakleys recently learned that one of Eva’s tumors had started growing again.

“Eve also has a lot going on with high blood pressure, a history of seizures, so we have to watch for that and short bowel syndrome,” Oakley said. “She’s in danger of having these intestines twist again and the same thing happening.”

Eva also has hearing loss and mostly signs for communication. However, this does not stop her from enjoying life.

Offering normalcy in the midst of illness

Eva is adventurous and boisterous. She would be the first in line to ride the roller coaster.

“She’s outspoken and fearless,” Oakley said. “He speaks very little, but communicates in sign language and other ways.”

Ela is “shyer” and needs much more love and support from her parents. While Oakley tries to enjoy fun activities with her kids, the cost sometimes makes it impossible for them to do things. When organizations offer free tickets, Oakley tries to get them so the girls can do some of the same activities as their friends.

“There’s a farm about 15 minutes from here that they love and it’s cheap,” Oakley said. “They pet the animals, they play in the big sandbox.”

Oakley is sharing the twins’ story on social media to raise awareness of childhood cancer. Even when things are tough, she tries to stay optimistic.

“Never give up. We got dealt a bad hand,” Oakley said. “I’m just trying to do something with it to help others be aware that childhood cancer exists.”

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