At only 10 days old, Eve Oakley experienced a medical crisis, underwent emergency surgery and spent about six months in the hospital. During an eye exam, a doctor noticed tumors in Eve’s eye. They diagnosed her with retinoblastoma, a cancer in the retina. A few days later, Ella, Eve’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, off and on, but they want to raise awareness and offer optimism to others.
“I live a life full of hope for them, and I live a life (knowing) tomorrow isn’t promised,” Maryann Oakley, 43, of Marysville, Pennsylvania, told TODAY. “I’m making memories for them as much as possible because I feel like I’ve lost of lot of time. … But in between those scary times, it’s just making sure that they’re happy.”
Surprise twin pregnancy and scary diagnosis
When Maryann Oakley was pregnant, she and her husband felt stunned to learn she was carrying fraternal twins. At one point, it seemed as if only one twin might survive, but they both developed and the pregnancy then seemed healthy. At 37 weeks pregnant, Oakley delivered the girls via Cesarean-section.
“They only stayed in the hospital for about the standard three days. They weighed 5 pounds roughly when they were born, and they had jaundice,” Oakley recalled. “We thought that was the hardest part.”
Around New Year’s Eve 2017, about 10 days after the girls were born, Eve started behaving unusually.
“She was not eating, and she was just screaming,” her mom recalled. “We just knew something was wrong.”
They took Eve to the local hospital, where her vital signs dropped and her skin turned gray. Staff began rushing to treat her.
“They thought it was meningitis,” Oakley said. “She was hooked up to a million things. She was just wailing in this pain. It wasn’t like a normal baby.”
They next day doctors performed exploratory surgery on her and discovered she had a twisted bowel, the cause of her symptoms. Doctors removed part of her bowel and created an ostomy, an opening in the body that allows feces to pass into an external bag. While Eve was recovering, she went into cardiac arrest.
“Everything was so foggy. It was scary,” Oakley said. “They were using these medications, trying to bring her back. I could hear them screaming, ‘Give her more. Give her more,’ trying to get her stable.”
Soon after, Eve went into septic shock, her kidneys and liver were failing, and she was urinating blood. She started having seizures.
During an eye exam with her eyes dilated, doctors noticed tumors in her left eye, a sign of retinoblastoma, where cancer cells form in the tissue of the retina.
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 every year. Infants and young kids are most likely to get it, and it’s rare in children over 6. About 90% of U.S. children with retinoblastoma are cured, but this stat drops if the cancer spreads outside the eye. Retinoblastoma can lead to blindness and other vision problems.
Finding the right care
The hospital where Eve was didn’t specialize in retinoblastoma, but they needed to her to be stable before sending her elsewhere. Meanwhile, doctors recommended Ella also get checked.
“Ella was diagnosed (with retinoblastoma) probably just a couple days after Eve,” Oakley said. “There (was) a lot going on.”
A twin being diagnosed with cancer increases the likelihood that the other one will develop the same or another type of cancer, a 2016 study in JAMA found. The risk is higher in identical twins than it is in fraternal twins. The study looked at data on 3,316 sets of twins where both developed cancer; of these, 38% of identical twins and 26% of fraternal twins developed the same cancer.
Ella started chemotherapy immediately at Children’s Hospital of Philadelphia. When Eve was strong enough, she was flown to the hospital so that when she recovered, she could start chemotherapy, too. Oakley struggled to process that both her newborn daughters had cancer.
“Everything went so fast,” she said. “You’re just going through the motions to make sure they get the best treatment.”
Eve’s health was more precarious, so she stayed in the hospital, a two and a half hour drive from home, while Ella went to outpatient treatment. Eve was on life support for a while, and her parents took turns tending to her or her sister. Every day, either Mom or Dad stayed in the hospital with Eve; the other took Ella to appointments.
Eventually, Ella started experiencing chemo side effects.
“She was sick for her first round of chemotherapy. Every time she would move, it would be like screaming. It’s awful,” Oakley said. “It was six days that Ella was sick on her first round.”
When Eve started chemotherapy, she also became sick, like Ella, but because she was in patient, it was easier to manage. She did endure several infections and a blood clot, though.
More health challenges
By June 2018, both girls were home and done with treatment. But in August 2018, Ella relapsed. “It was a small tumor. They were able to treat it with laser radiation therapy,” Oakley said. “That was good.”
Even though Ella’s been stable since August 2018, she’s considered “high risk for relapse” because retinoblastoma develops as the eyes grow, Oakley explained. Ella still has “tiny” tumors in both eyes, but they’ve shrunk with treatment, so the family hopes they’re “dead.”
Also around the summer of 2018, Eve had her bowels reconnected so she no longer needed the ostomy. To this day, she has short bowel syndrome and some vitamin deficiencies from it, and her blood pressure is still “dangerously high” because she experienced kidney failure, Oakley said. Eve’s kidneys still need time to heal.
The family was thrown another curveball when Eve relapsed in March 2022. She was treated, but in November 2022, she relapsed again and started cryotherapy, a treatment that uses extreme cold to destroy cancer cells, according to Cancer Research UK. The Oakleys recently learned one of Eve’s tumors has started growing again.
“Eve also has a lot going on with the high blood pressure, the history of seizures, so we have to keep an eye on that, and the short gut syndrome,” Oakley said. “She’s at risk for this gut to twist again and the same thing happening.”
Eve also has hearing loss and mostly signs to communicate. Still, that doesn’t stop her from enjoying life.
Offering normalcy in the middle of illness
Eve is adventurous and boisterous. She’d be the first to line up to ride a rollercoaster.
“She’s outgoing and fearless,” Oakley said. “She has very little speech, but she communicates with sign language and other ways.”
Ella is “more timid” and needs a lot more love and support from her parents. While Oakley tries to enjoy fun activities with her children, the cost sometimes prohibits them from doing things. When organizations offer free tickets, Oakley tries to get them so the girls can do some of the same activities that their friends do.
“There’s a farm probably about 15 minutes from here that they love and that’s inexpensive,” Oakley said. “They pet the animals, play in a big sandbox.”
Oakley shares the twins’ story on social media to raise awareness of childhood cancer. Even when things feel tough, she tries to stay upbeat.
“Never give up. We have been dealt a bad hand of cards,” Oakley said. “I’m just trying really to do something with it to help others be aware that childhood cancer does exist.”
This article was originally published on TODAY.com