In just 10 days, Eve Oakley had a medical crisis, underwent emergency surgery and spent six months in the hospital. During an eye exam, a doctor noticed tumors in Eve’s eye. They examined her Retinoblastoma, cancer in the retina. A few days later, Ella, Eve’s twin, was diagnosed with the same cancer.
The Oakley family now faces many challenges as their 4 twins continue to live with cancer, but they want to raise awareness and give others hope.
“I live a life full of hope for them, and I live life (knowing),” said Marian Oakley, 43, of Marysville, Pennsylvania. “I feel like I’ve wasted a lot of time, so I’m making as many memories as possible. … But it’s just making sure they’re happy in the midst of those scary moments.”
A surprising twin pregnancy and a terrifying diagnosis
When Marian Oakley was pregnant, she and her husband were shocked to learn that she was carrying fraternal twins. At one point, it looked like only one twin would survive, but both grew and the pregnancy seemed healthy. At 37 weeks pregnant, Oakley delivered the girls by caesarean section.
“They were only in the hospital for about three days. They weighed about 5 pounds when they were born, and they were jaundiced,” Oakley recalled. “We thought that was the hardest part.”
In the year Around New Year’s Eve 2017, 10 days after the girls were born, Eve started behaving strangely.
“She wouldn’t eat and she would scream,” her mother recalled. “We knew there was a problem.”
They took Eve to a local hospital, where her vital signs dropped and her skin turned gray. The staff started running to treat her.
“They thought it was meningitis,” Oakley said. “She’s attached to a million things. She was just moaning in agony. He wasn’t like a normal baby.
The next day, doctors performed exploratory surgery and found that her intestines were twisted, which was the cause of her pain. Doctors removed part of her intestine and created an ostomy, which created a hole in her body that allowed feces to flow into an external bag. Eve walks in while she is recovering. Stop the heart beat.
“Everything was very foggy. It was scary,” Oakley said. “They were trying to bring her back using these drugs. ‘Give her more. “You’re trying to calm her down.”
Eve soon went into septic shock, her kidneys and liver had failed, and she was urinating blood. She started having seizures.
During an eye exam while her eyes were dilated, doctors noticed a tumor in her left eye, a sign of retinoblastoma, where cancer cells form in the retinal tissue.
Retinoblastoma is the most common eye cancer in children, accounting for 2% of all childhood cancers. According to the American Cancer Society. Only 200 to 300 pediatric cases are reported each year. Infants and young children are most likely to get it, and it is rare in children over age 6. About 90% of American children with retinoblastoma will be cured, but this statistic drops if the cancer has spread outside the eye. Retinoblastoma can lead to blindness and other vision problems.
Getting the right care
Eve’s hospital did not specialize in retinoblastoma, but she needed to be stabilized before being transferred. Meanwhile, doctors advise Ella to get tested.
“Ella was diagnosed (with retinoblastoma) maybe a few days later,” Oakley said. “It was a lot (a lot).”
When one twin is diagnosed with cancer, the other increases the risk of developing 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 had cancer. Of these, 38% of identical twins and 26% of fraternal twins developed identical cancer.
Ella began chemotherapy immediately at Children’s Hospital of Philadelphia. When Eve is strong enough, she is taken to the hospital to start chemotherapy. Oakley struggled to process that both of 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 critical, so she stayed at a drive-thru hospital, a two and a half hour drive from home, while Ella went to the outpatient clinic. Eve was on life support for a while, and her parents took turns caring for her or her sister. Every day mom or dad stayed with Eve in the hospital; Another Elan took him to appointments.
Eventually, Ella began experiencing side effects from the chemo.
“She got sick during the first round of chemotherapy. It’s like screaming every time you move. It’s terrible,” Oakley said. “Ella was sick for six days in the first round.”
When Eve started chemotherapy, she was just as sick as Ella, but because she was patient, it was easier to manage. But she endured several infections and blood clots.
Additional health challenges
In the year By June 2018, both girls were home and finished treatment. But in August 2018, Ella relapsed. “It was a small tumor. They were able to treat it with laser radiation therapy,” Oakley said. “It was good.”
Although Ella has been stable since August 2018, she is considered “high risk for relapse” because retinoblastoma grows as eyes grow, Oakley explained. Ella still has “small” tumors in both eyes, but they have shrunk due to treatment, so the family hopes they are “dead”.
Also, around the summer of 2018, Eve will no longer need an ostomy as her bowel has been reconnected. To this day, she has short bowel syndrome and some vitamin deficiencies, and her blood pressure is still “dangerously high” because she has kidney failure, Oakley said. Eve’s kidney still needs time to heal.
When Eve grew up in March 2022, the family was thrown another curveball. She was treated, but in November 2022, she relapsed and began cryotherapy, a treatment that uses extreme cold to destroy cancer cells. According to Cancer Research UK. The Oakleys recently discovered that one of Eve’s tumors had started to grow again.
“Eve has a lot to do with high blood pressure, a history of seizures, so we have to watch for that and short gut syndrome,” Oakley said. “She’s at risk of this gut twisting again and the same thing happening.”
Eve is hard of hearing and mostly signs to communicate. Still, that doesn’t stop her from having fun.
Providing normality in the midst of pain
Eve is adventurous and boastful. She will be the first to ride the rollercoaster.
“She’s playful and fearless,” Oakley said. “She speaks very little, but she communicates through sign language and other ways.”
Ella is “more shy” and needs a lot more love and support from her parents. While Oakley tries to enjoy fun activities with her children, the cost sometimes prevents them from doing things. When organizations offer free tickets, Oakley tries to find them so the girls can do some of the same activities their friends do.
“About 15 minutes from here, there’s a farm that you love and it’s cheap,” Oakley said. “They raise the animals, they play in a big sandbox.”
Oakley shares the twins’ story on social media to raise awareness about childhood cancer. Even when things seem difficult, she tries to make a positive move.
“Don’t give up, don’t give up. We’ve been dealt a bad hand,” Oakley said. “I’m trying to do something about it to help other people know about childhood cancer.”
This article was originally published by TODAY.com