Newborn twins diagnosed with retinoblastoma just three days later

Marianne Oakley, 43, in Harrisburg, Pennsylvania, was thrilled when she gave birth to healthy twin babies, Ella and Eve, in December 2017.

Then both were diagnosed with cancer.

Just 10 days after they were born, Marianne and her husband, Nathan, 35, noticed Eve not eating. Although a constantly crying newborn at 10 days old is not out of the ordinary, worried parents could feel it hurts.

“She was sobbing all of a sudden,” Marianne said.

Sure enough, after she was rushed to the hospital, emergency docs on site found a crooked bowl. Little Eve then went into septic shock after an emergency surgery in which part of her large intestine was removed.

“We had no idea if it would work,” Marianne recalled her horror when they were told that Eve’s organs were breaking down.

Two tragic diagnoses

When the doctors examined Eve’s eyes, they found a lump. She was diagnosed with retinoblastoma, a rare type of eye cancer, at just weeks old.

Related: A 2-year-old was diagnosed with retinoblastoma after his mother noticed his eyes changed colors; When parents should worry

“We knew right away that we needed to get Ella to check in, too,” said the full-time caregiver.

Then the family’s nightmare worsened as Eve’s twin Ella was diagnosed with the same cancer just three days later.

Cancer return

In fighting cancer together, the twins, who are now 4 years old, have managed to beat it. But just last March, Eve’s cancer sadly came back again.

“We’ve been crushed,” Marianne expressed, as the family had to endure another battle against cancer. “She is undergoing cryotherapy which freezes the cancer cells. It is really painful for her when she comes in.”

Eve and Ella Oakley

“Everything is still uncertain, but we try to make every day as special as possible for them,” she added.

After her first fight as a child, Eve lost much of her hearing and had to wear hearing aids due to septic shock. She also suffers from “severe high blood pressure”.

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“It was very difficult, and it is now our life,” Marianne said of her unfortunate new normal. “We don’t know anything different. Cancer is our nature. Ella is so upset every time Eve leaves for treatment.”

Dealing with childhood cancer

When you have a child with Cancer, it’s hard to pay close attention to many of life’s other demands — and this may include nurturing other relationships. Unfortunately, for parents looking after a child with cancer, the stress of the situation can harm the relationship. Jayne Wexler, a New York City-based photographer whose son Justice is a childhood cancer survivor, said she’s seen many couples struggle and eventually collapse under intense stress.

“When we were in the hospital, we met a lot of couples, and a lot of people don’t stay together because they can handle this,” Jane told SurvivorNet. “Fortunately, we [she and her husband] They were very strong and we stayed together.”

The impact of a childhood cancer diagnosis on the whole family

Jane noted that she and her husband would always fear for the health of justice, given everything they’ve been through, but said they work through that fear together. They try to appreciate every moment they spend together as a family, and they even attended parenting therapy to get through some tough times.

Mental Health: Maintaining a Positive Vacuum

“There’s always some kind of anxiety,” Jane said. “…we have to live every day and be thankful for what we have, and it’s hard to remember when, especially in New York City, you get caught with all this craziness. It’s so hard just enjoy the moment.”

However, they do their best – and like the Oakley family, they do it together.

Initial trauma treatment

When someone is traumatized or traumatized by an initial diagnosis, it is very difficult to treat that trauma, according to Sarah Kellya social oncologist and director of social work training at CancerCare, who discusses the initial news hit of a cancer diagnosis.

“Your mind can go completely blank,” she told SurvivorNet. “If we think of fight or flight or freeze, then freeze as a big event that happens, where there’s like, ‘Oh my God. I have no idea what to do.'”

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Kelly notes that emotional health and quality of life are related to survival. “Meaning, better quality of life is associated with better survival, and better outcomes.”

She suggests working on your emotional health, physical well-being, and social environment, all of which can affect survival. The Oakley family, from the start, appears to have been very attentive and caring to the medical needs of the twins. They trust their sharp instincts, get nurtured right away, and do everything they can to get Eve out of this fight a second time.

Signs and symptoms of this type of eye cancer

Retinoblastoma is often diagnosed after a parent or doctor notices something unusual in a child’s eye.

This type of eye cancer according to a study conducted by Dr Indian Journal of Ophthalmologyhas an increased genetic risk in sons and siblings, especially twins.

Two of the most common signs and symptoms include:

  • white pupillary reflex (leukocoria) – the pupil appears white or pink instead of red when the eye is shining
  • Lazy eye (strabismus) – the eyes do not seem to look in the same direction

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Other less common signs and symptoms can be:

  • vision problems
  • eye pain
  • Redness of the white of the eye
  • Bleeding in the front of the eye
  • exophthalmos
  • Pupil does not shrink when exposed to bright light
  • A different color in each iris (the colored part of the eye)

And if the cancer has spread outside the eye, symptoms can vary depending on where the cancer is currently. Symptoms of these scenarios can include:

  • Loss of appetite and weight loss
  • Headache
  • vomiting
  • Lumps under the skin in the neck

It is important to note, however, that many of these signs and symptoms are likely caused by something other than retinoblastoma. However, you should always bring any of these symptoms to your child’s doctor if they occur because the outlook for patients with retinoblastoma is not good if the cancer has spread outside the eye.

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