Identical Twin Girls Diagnosed With Retinoblastoma Weeks After Birth

  • Maryann Oakley was shocked when doctors diagnosed one of her newborns with eye cancer.
  • A few days later, doctors found that the baby’s twin sister had the same cancer.
  • This is Oakley’s story, as told to Jane Ridley.

This essay is based on a conversation with Maryann Oakley. Edited for length and clarity.

Every few months our identical twins, Ella and Eva, undergo general anesthesia. They are fully sedated for the eye exams and MRIs.

Doctors stick Disney stickers on the masks that go over their faces. Do they put scented lip balm around the lips? the anesthesiologists said the perfume helps mask the smell of the gas.

Eva was diagnosed with retinoblastoma, a type of eye cancer, when she was just one week old. 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 Eva’s cancer could have spread to her brain

Our journey began on New Year’s Eve 2017. Eve stopped feeding and was writhing around, clearly in pain. We took her to the hospital.

Doctors performed an exploratory operation on her stomach. They removed part of her intestine because she had a twisted intestine.

After the operation he suffered septic shock. Her organs began to fail and she went into cardiac arrest. It happened so fast. My mind was in a fog. Doctors and nurses performed 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. He had retinoblastoma.

We couldn’t believe she had cancer on top of everything else. They said the cancer could have spread to her brain.

A father holds his newborn twins shortly after they were both diagnosed with cancer

Nathan Oakley holds Eve and Ella.

Courtesy of Maryann Oakley

It was a shock.

The oncologist then examined Ella. He told us he also had cancer. 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 support them.

Ella immediately started chemotherapy. But Eva was very sick. Doctors said they will check her tumor after a week. It had doubled in size. They also started Eva’s chemotherapy.

The treatments were exhausting — both for us and for the girls

Eva had a severe allergic reaction to one of the chemotherapy treatments, but she continued to fight.

Ella was considered well enough to be sedated for the eye exams, but Eva was not. It broke my heart to hear her cry when they used forceps to hold her eyes open. She had to wait until she was 4 months old before doctors said it was safe to put her down.

The treatments were exhausting. Eva was internal and Ella external. Eva had several blood transfusions. He contracted infections and developed a blood clot. We later learned that a drug that had helped save her life in the ICU had caused hearing loss. He now has speech therapy and wears hearing aids. We have all learned sign language to be able to communicate better with it.

The Oakley twins sit together in a hospital chair.  They are wearing masks because of covid.

Ella and Eve have regular MRIs and eye exams.

Courtesy of Maryann Oakley

Fortunately, the chemotherapy was successful. The oncologist said they were stable when they were about 6 months old.

Eva finally came home. We had our hands full. Eva needed blood thinning shots in her legs because of the clot.

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 radiotherapy.

Eva’s retinoblastoma came back in March 2022

Every few months the girls have eye exams, blood tests and an MRI to check if new tumors have formed. They are used to the tests. They don’t fear the hospital – it’s the only one they’ve ever known.

In March, one of the scans showed that Eva’s cancer had returned. We were devastated. You start to feel like you’re in such a good spot. You feel comfortable. Then there’s another knock. I won’t be comfortable for a while now.

A mom and dad pose on a beach with their identical twin daughters.

Nathan and Maryann Oakley say they want their daughters to enjoy life outside the hospital.

Courtesy of Maryann Oakley

I cried when the doctors told us. I am not ashamed to cry in front of them. I’ve done it so many times. But we 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?”

Eva had cryotherapy, which kills retinoblastoma cells by freezing them. The procedure caused Eva’s eye to swell and turn red.

Ella screamed one day when she came back from therapy — she said, “What’s wrong with Eva?” He scared Eva and ran to the mirror. She started screaming too.

We reassured them, telling Ella that Eva 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 Eva all the time. She is good at signing. He helps Eva all the time, especially when they go to kindergarten.

We will find out in mid-November if Eva’s cancer is still active. We have set up a GoFundMe to help with medical expenses.

We try to pack as much as possible so the twins can have fun when they are not in the hospital. We create memories. We live day by day.

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