YORK, Pa. – Eve and Ella Oakley’s wish has come true. The twins are on vacation in Florida.
They’re taking a break from the hospitals and tests and therapies in their battle with cancer, a war they’ve waged since they were born two years ago.
And it isn’t the only battle they’ve endured.
“Literally, the craziness started as soon as I found out I was pregnant,” said mom Maryann Oakley of Marysville, Pennsylvania, just north of Harrisburg. Pregnant at 38, Oakley fell into the higher-risk category for being over the age of 35, so an ultrasound was done early in her pregnancy.
Oakley carried two embryo sacs – twins – but only one of them had a heartbeat. Doctors believed the other sac wouldn’t survive. Its cells would vanish, ultimately re-absorbed by the other embryo and the mother.
Oakley and her husband, Nathan, accepted that they would have only one baby – until a second ultrasound, when another heartbeat was discovered.
“Eve was in this tiny little sac, and Ella’s (sac) was huge,” Oakley said.
Fraternal twins Ella Rose and Eve Elizabeth arrived on Dec. 19, 2017. Ella was a few ounces bigger than Eve, but both weighed about 5 pounds. The only challenge they faced in those first days was jaundice. Their mother cried as she watched them go into a baby warmer for light therapy.
It was awful, she thought, not imagining what would come next.
The painful journey
A couple of days into life, the twins went home, teaching their parents what a double dose of children felt like, all good though a bit overwhelming.
“All of a sudden, everything went downhill on the 10th day,” Oakley said.
Eve stopped eating, and she cried so much that the Oakleys took her to Hershey Medical Center, where the twins had been born.
“She looked awful, and she was just moaning in pain,” Oakley said. Hooked up to machines, Eve was treated for meningitis at first, as doctors tried to rule out possibilities. Tests showed it was a twisted bowel.
A litany of nearly fatal turns for Eve followed: surgery, cardiac arrest, septic shock, then seizures.
“Then, they said, she might have brain damage if or when she wakes up,” Oakley said.
If. Not a word they were ready to hear.
One day, the Oakleys sat in the hospital cafeteria silently.
“We hear others laughing, babies crying, and loved ones hugging each other. All my husband could say was: ‘Is this going to be our lives now?'” Oakley remembered. “Just two weeks prior, I was carrying them safely in my womb, and now everything had changed.”
Eve was put on life support because her liver and kidneys started to fail while doctors did scans of her organs. When they looked at her eyes, they noticed a cloudiness.
It was Retinoblastoma, a rare form of cancer. A few days later, with Eve still in critical condition, Oakley took the other twin, Ella, to Wills Eye Hospital in Philadelphia.
Another blow: She had cancer in both eyes.
“I was hysterical,” Oakley said. “You don’t have a second to breathe.”
The doctors told her that Ella would start on chemotherapy in two days. Eve was then flown to Children’s Hospital of Philadelphia for continued treatment of her bowel and sepsis and, eventually, chemotherapy for her cancer.
“Our lives have been uprooted,” Oakley said. For six months, the twins’ parents didn’t live under the same roof, talking regularly but only about their newborns. “I don’t think we even had time to mourn the situation.”
A relative told Oakley to prepare herself for the worst. “But, as a parent, you never give up hope,” she said.
Chemotherapy continued for both twins. Eve’s health improved, but life hung in the balance again when she had an allergic reaction to the cancer treatment.
“She turned blue, and they almost lost her again,” Oakley said. “You have to argue with the doctors. Do you give this chemotherapy again? They were like, ‘Yes, we need to save her life.’ But it also almost took her life.”
The doctors went ahead with the next round of chemo, but they treated her first for the allergy, and she was OK. It didn’t end, though. Infections threatened her again and again, yet she always pulled through.
“She almost lost her life so many times,” Oakley said.
The leader and the brave one
The first time Oakley heard her twins laugh, they were watching “The Ellen DeGeneres Show.” They have since grown to become her fans. “Ellen makes the twins laugh on their toughest days.”
They also share a love for the Dave Matthews Band, dancing to his music at home.
“For everything they’re going through and have been through, you wouldn’t even know,” Oakley said.
“Ella is like the leader in the house. She pushes poor Miss Eve around,” Oakley said.
The name “Miss Eve” came from a nurse originally, Oakley said, and it stuck.
Miss Eve is the brave one, especially on the rides in Disney World, a “wish trip” provided to them by Give Kids the World, an 84-acre resort in Florida that gives children with critical illnesses and their families a week-long vacation. With two babies, the Oakleys received two wishes, each asking for a week at the resort.
“Wish trips” at the resort include meals, transportation, nightly entertainment and passes to Orlando’s theme parks and other attractions. The resort works with more than 250 wish-granting organizations all over the world.
The twins’ dad, Nathan, joined the family in Florida for the second week but missed the first week because he juggles three jobs as a sound and lighting engineer, working seven days a week. His wife hasn’t worked for two years, unexpectedly becoming a full-time caregiver for her girls.
Eve returned from the children’s hospital in June 2018, six months after her health issues started. That month, she and Ella faced their final round of chemotherapy together.
Their mother isn’t sure the extent, if at all, that their eyesight has been affected by the cancerous tumors on their eyes.
Without full-time nursing care available to them, the Oakleys had taken classes at the Children’s Hospital of Philadelphia to learn nursing practices: how to change a feeding tube, clean a colostomy bag, and give shots.
“Me and my husband were around-the-clock nurses,” she said.
Eve, who has high blood pressure as well, had her bowel reconnected in August 2018, the same month doctors discovered a new tumor in Ella’s eye. Laser surgery removed it, but the twins’ battle isn’t over.
“Every cell of their body has a mutation that can cause eye cancer,” Oakley said. They are at a high risk for new eye tumors until their eyes stop growing, somewhere between 3 and 5 years of age. They also have a risk for brain cancer, trilateral blastoma. They’re checked every three months for tumors, undergo physical and occupational therapies each week, and have regular check-ins with doctors.
Eve has also been diagnosed with a hearing disorder because of the drug used to save her life previously. They don’t know yet if she could have surgery to improve it or if she’ll require hearing aids.
Both of the twins are learning sign language, and the Oakleys hope to place them in a school together some day.
Days with hope
Before the twins were born, Oakley lost her mother to uterine cancer. She taught her daughter how to be a strong mother, Oakley said.
“While Eve was on life support, I would stand outside and just talk to her in heaven, asking that she give Eve and Ella the strength to pull through,” said Oakley, who was recently called a “supermom” on actress Kristen Bell’s Instagram page.
While both girls still have cancerous tumors in their eyes – “stable” at this point – they’re thriving despite all they’ve endured.
Their parents raise them in a two-bedroom condo and drive an old mini-van, saving every cent for the unexpected costs that could await them. To help with medical travel, they’ve raised $32,000 on a gofundme page, and they keep friends, family and other parents facing similar issues updated on a Facebook page. The children are insured through medical assistance, which has paid all of their hospital bills so far.
The babies will be continually monitored for the next few years. At about age 5, the testing will slow down a bit, Oakley said.
She and her husband face their days with hope, watching their two girls laughing and playing and thriving in a world that, at one time, existed for them far outside of a hospital room.
“I just hope that they will continue to be so courageous and brave. I hope that they don’t have any more cancer that comes back. I hope they go on to do amazing things, inspire others, Oakley said. “I hope that they live and grow up. First and foremost is that they live.”
Follow Kim Strong on Twitter: @kimstrong333
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