Double the Heartbreak
- Maryann Oakley from Harrisburg, Pennsylvania was overjoyed when she delivered two healthy twin girls back in December 2017. Then they were both diagnosed with retinoblastoma, a rare type of eye cancer.
- Battling cancer together, the twins, now age 4, luckily made it through. But just last March, sadly Eve’s cancer came back, and the family is having to deal with yet another traumatic cancer battle.
- Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child's eye. Two of the more common signs and symptoms include: the pupil appearing white or pink instead of red when you shine a light in the eye, or a lazy eye, when the eyes don’t appear to look in the same direction.
Then they were both diagnosed with cancer.
Read More"We had no idea if she would make it," Maryann recalled of her terror when they were told that Eve’s organs were failing.
Two Tragic Diagnoses
When the physicians examined Eve’s eyes, they found a tumor; she was diagnosed with retinoblastoma, a rare type of eye cancer, at just weeks old.
"We knew straight away we needed to get Ella check out too," the full -time caregiver said.
The family’s nightmare then got much worse as Eve’s twin Ella was diagnosed with the exact same cancer just three days later.
A Cancer Recurrence
Battling cancer together, the twins, now age 4, luckily made it through. But just last March, sadly Eve’s cancer came back.
"We were crushed” Maryann expressed of the family having to endure yet another cancer battle. “She's undergoing cryotherapy which freezes the cancer cells. It's really painful for her when she comes round.”
"Everything is still so uncertain, but we try and make every day as special as we can for them,” she added.
After her first battle as a baby, Eve lost a lot of hearing and has to wear hearing aids because of the septic shock. She also has “extremely high blood pressure.”
"It's been so tough, and it's just become our lives now,” Maryann shared of their unfortunate new normal. "We don't know any different. Cancer is our normal. Ella is so upset every time Eve leaves for treatment.”
Coping with Childhood Cancer
When you have a child who is going through cancer, it's difficult to give ample attention to many of life's other demands and that may include nurturing other relationships. Unfortunately, for parents caring for a child with cancer, the strain of the situation can really damage the relationship. Jayne Wexler, an NYC-based photographer whose son Justice is a childhood cancer survivor, said she saw many couples struggle and eventually break under the intense pressure.
"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," Jayne told SurvivorNet. "Fortunately, we [she and her husband] were very strong and we stayed together."
The Impact of a Childhood Cancer Diagnosis on the Whole Family
Jayne pointed out that she and her husband will always have fear for Justice's health, given everything they have been through, but she said that they work through that fear together. They try to appreciate every moment they have together as a family, and they even attended parenting therapy to get through some of the harder times.
Mental Health: Maintaining a Positive Headspace
"There's always some sort of worry," Jayne said. "… We have to live each day and be thankful for what we have, and it's hard to remember that when you're caught up, especially in New York City, with all the craziness. It's very hard just to sort of enjoy the moment."
Still, they do their bestand like the Oakley family, they do it together.
Processing the Initial Shock
When someone is sort of struck or hit with that shock of initial diagnosis, it is extremely difficult to process that trauma, according to Sarah Kelly, an oncology social worker and Director of Social Work Training at CancerCare, who discusses the blow of initial news of a cancer diagnosis.
“Your mind can go completely blank,” she tells SurvivorNet. “If we think of fight or flight or freeze, freeze as a big one that happens, where there’s like, ‘oh, my gosh. I have no idea what to do.'”
Kelly notes that emotional health, quality of life, is associated with survival. “Meaning, better quality of life is associated with better survival, better outcomes.”
She suggests working on your emotional health, your physical well-being, and your social environment, which can all impact survival. It seems the Oakleys, from the very beginning, have been overly attentive and nurturing to the twins’ medical needs. They trusted their sharp instincts, got them care right away, and are doing everything in their power to get Eve through this battle a second time.
Signs and Symptoms of This Type of Eye Cancer
Retinoblastoma is most often diagnosed after a parent or doctor notices something unusual about a child's eye.
This type of eye cancer, according to a study by the Indian Journal of Ophthalmology, has an increased inheritance risk in offspring and siblings, especially twins.
Two of the more common signs and symptoms include:
- White pupillary reflex (leukocoria) the pupil appears white or pink instead of red when you shine a light in the eye
- Lazy eye (strabismus) the eyes don't appear to look in the same direction
Other less common signs and symptoms can be:
- Vision problems
- Eye pain
- Redness of the white part of the eye
- Bleeding in the front part of the eye
- Bulging of the eye
- A pupil that doesn't get smaller when exposed to bright light
- A different color in each iris (the colored part of the eye)
And if the cancer spreads outside the eye, symptoms can vary depending on where the cancer currently is. Symptoms for these scenarios can include:
- Loss of appetite and weight loss
- Headache
- Vomiting
- Lumps under the skin in the neck
It's important to note, however, that many of these signs and symptoms are more likely to be caused by something other than retinoblastoma. Even still, you should always bring up any of these symptoms to your child's doctor should they occur because the outlook for retinoblastoma patients is not as good if the cancer has had time to spread outside of the eye.
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