- Maryann Oakley was shocked when doctors diagnosed one of her newborns with an eye cancer.
- A few days later, doctors found that the baby’s identical twin sister had the same cancer.
- This is Oakley’s story, as told to Jane Ridley.
This as-told-to essay is based on a conversation with Maryann Oakley. It has been edited for length and clarity.
Every few months our identical twins, Ella and Eve, are put under general anesthesia. They’re fully sedated for their eye exams and MRIs.
The physicians attach Disney stickers to the masks that go over their faces. They put flavored lip balm around the rim; the anesthesiologists said the scent helps cover up the smell of the gas.
Eve was diagnosed with retinoblastoma, a type of cancer of the eye, when she was just over a week old. The doctors examined Ella three days later: She had the same disease.
The twins will be 5 in December. We’ll have a birthday party, of course. But my husband, Nathan, and I treat them like birthday girls every day. We try to make the most of every moment. We don’t know how long the four of us will be together.
We were told that Eve’s cancer could spread to her brain
Our journey began on New Year’s Eve 2017. Eve stopped feeding and was twisting around, clearly in pain. We took her to the hospital.
The doctors did exploratory surgery on her stomach. They removed a section of her intestine because she had a twisted bowel.
She went into septic shock after the operation. Her organs started to fail, and she experienced cardiac arrest. It happened so quickly. My mind was in a fog. The doctors and nurses did CPR and got her heart beating again.
They put her on life support and checked every part of her body. They found a tumor in one of her eyes. She had retinoblastoma.
We couldn’t believe that she had cancer on top of everything else. They said the cancer could spread to her brain.
It was a shock.
Next, the oncologist examined Ella. He told us that she had cancer, too. She had two tumors in her eye. It broke me. I thought: “We have two beautiful babies. How could this happen to our family?”
I pulled myself together. Nathan and I had no choice. We had to support our daughters. We had to advocate for them.
Ella started chemotherapy immediately. But Eve was too sick. The doctors said they would check her tumor after a week. It had doubled in size. They started Eve’s chemotherapy, too.
The treatments were exhausting — for both of us and the girls
Eve had a severe allergic reaction to one of the chemo, but she kept on fighting.
Ella was considered well enough to be sedated for her eye examinations, but Eve was not. It broke my heart to hear her crying when they used forceps to keep her eye open. She had to wait until she was 4 months old before the doctors said it was safe to put her under.
The treatments were exhausting. Eve was an inpatient, and Ella was an outpatient. Eve had a lot of blood transfusions. She contracted infections and developed a blood clot. We found out later that a medication that had helped save her life in the ICU had caused hearing loss. She now has speech therapy and wears hearing aids. We’ve all learned sign language so we can communicate with her better.
Thankfully, the chemotherapy was a success. The oncologist said they were stable when they were around 6 months old.
Eve finally came home. We had our hands full. Eve needed blood-thinning shots in her legs because of the blood clot.
The doctors had warned us that retinoblastoma had a high risk of recurrence. They found another tumor in Ella’s eye in August 2018. They managed to get rid of it with radiation therapy.
Eve’s retinoblastoma came back in March 2022
Every few months the girls have eye examinations, blood tests, and MRIs to check whether any new tumors have formed. They’ve gotten used to the tests. They’re not scared of the hospital — it’s all they’ve ever known.
In March, one of the scans showed that Eve’s cancer was back. We were devastated. You start to feel like you’re in such a good spot. You get comfortable. Then there’s another blow. I won’t be getting comfortable for a while now.
I cried when the doctors told us. I’m not embarrassed to cry in front of them; I’ve done it so many times. But we’ve never stopped asking them questions. Every time something bad happens, we say, “What’s the next step?” and “How can we get this tumor under control?”
Eve had cryotherapy, which kills the retinoblastoma cells by freezing them. The procedure made Eve’s eye swell up and turn blood red.
Ella screamed one day when she came back from treatment — she said, “What’s wrong with Eve?” It scared Eve, and she ran to the mirror. She started screaming, too.
We calmed them down, telling Ella that Eve had “a boo-boo” that would soon go away.
We want to create memories for our twins for as long as we can
Ella watches out for Eve all the time. She’s good at signing. She helps Eve all the time, especially when they’re in nursery school.
We’ll find out in mid-November whether Eve’s cancer is still active. We’ve set up a GoFundMe to help with the medical expenses.
We try to pack in as much as possible so the twins have fun when they’re not in the hospital. We’re creating memories. We live day to day.
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