Mom shares 4-year journey with twins who have same rare eye cancer: ‘A life full of hope’

Eve Oakley had a medical crisis at the age of ten days, had emergency surgery, and spent six months in the hospital.

A doctor discovered malignancies in Eve’s eye during an eye exam. They diagnosed her with retinoblastoma, a type of retinal cancer. Ella, Eve’s twin, was diagnosed with the same cancer a few days later.

The Oakleys have experienced many hardships as their twins, now four, battle cancer on and off, but they want to raise awareness and offer hope to others.

“I live a life full of optimism for children, but I also live a life knowing that tomorrow isn’t guaranteed,” Maryann Oakley, 43, of Marysville, Pennsylvania, told.

“I’m building as many memories for them as I can because I feel like I’ve lost a lot of time.” But in between those terrifying moments, it’s just making sure they’re happy.”

When Maryann Oakley found out she was expecting twins, she and her husband were taken aback.

At one time, it appeared like only one twin would survive, but they both matured and the pregnancy appeared to be healthy. Oakley had the girls delivered via Cesarean section when she was 37 weeks pregnant…

“They only stayed in the hospital for about three days.” “They were about 5 pounds when they were delivered, and they were jaundiced,” Oakley recounted. “We felt that was the most difficult aspect.”

Eve began acting strangely around New Year’s Eve 2017, roughly 10 days after the girls were born.

“She wasn’t eating anything and was just wailing,” her mother said. “We just sensed something wasn’t right.”

Eve was sent to a nearby hospital, where her vital signs fell and her complexion went gray. Staff members rushed to treat her.

“They assumed it was meningitis,” Oakley explained. “She was wired into a million different things.” She was just crying in agony. It wasn’t your typical baby.”

The following day, surgeons performed exploratory surgery on her and discovered that she had a twisted colon, which was the source of her complaints.

Doctors excised a portion of her colon and implanted an ostomy, a bodily opening that allows feces to pass into an external bag. Eve went into cardiac arrest while she was recovering.

“Everything seemed hazy. “It was terrifying,” Oakley added. “They were attempting to bring her back with these drugs.” I could hear them yelling, ‘Give her more, give her more,’ in an attempt to stabilize her.”

Eve went into septic shock soon after, her kidneys and liver were failing, and she was urinating blood. She began to have seizures…

During a dilated eye exam, physicians discovered tumors in her left eye, an indication of retinoblastoma, a type of cancer that forms in the tissue of the retina.

According to the American Cancer Society, retinoblastoma is the most frequent type of eye cancer in children, accounting for 2% of all pediatric cancers. Every year, only 200 to 300 pediatric cases are diagnosed.

It is most common in infants and young children, and it is uncommon in children over the age of six.

Approximately 90% of children with retinoblastoma in the United States are cured, however this figure reduces if the cancer grows outside the eye.

Blindness and other vision disorders can result from retinoblastoma.

Choosing the Best Care

Eve was being treated at a hospital that did not specialize in retinoblastoma, but they needed her to be stable before sending her elsewhere. Meanwhile, doctors advised Ella to be examined as well.

“Ella was probably diagnosed with retinoblastoma just a couple days after Eve,” Oakley added. “There was quite a bit going on.”

A cancer diagnosis in one twin raises the probability that the other may have the same or a different type of cancer, according to a 2016 study published in JAMA. Identical twins are at a higher risk than fraternal twins.

The researchers examined data from 3,316 sets of twins in which both acquired cancer; 38% of identical twins and 26% of fraternal twins developed the same malignancy.

Ella began chemotherapy right away at Children’s Hospital of Philadelphia. Eve was rushed to the hospital when she was strong enough so that when she recovered, she could begin chemotherapy as well.

Oakley was having difficulty accepting the fact that both of her newborn daughters had cancer.

“Everything happened so quickly,” she remarked. “You’re just going through the motions to ensure they receive the finest care.”

Eve’s condition was more problematic, so she stayed in the hospital, which was a two and a half hour trip away, while Ella went to outpatient care.

Eve was on life support for a long, and her parents alternated between caring for her and her sister.

Every day, one of Mom or Dad stayed at the hospital with Eve while the other drove Ella to appointments.

Ella eventually began to experience chemo side effects.

“She became ill during her first round of chemotherapy.” Every time she moved, it sounded like she was screaming. “It’s terrible,” Oakley added. “On her first round, Ella was unwell for six days.”

Eve fell ill when she began chemotherapy, just like Ella, but because she was a patient, it was simpler to handle. She did, however, suffer from many illnesses and a blood clot.

More health issues

Both girls were home and out of treatment by June 2018. Ella relapsed in August 2018. “It was a minor tumor.” “It was treated with laser radiation therapy,” Oakley explained. “That was excellent.”

Ella has been stable since August 2018, but she is deemed “high risk for relapse” since retinoblastoma develops as the eyes grow, according to Oakley.

Ella still has “small” tumors in both eyes, but they’ve reduced as a result of treatment, and the family is hoping they’re “dead.”

Around the summer of 2018, Eve’s bowels were reconnected, and she no longer had the ostomy.

She still has short bowel syndrome and some vitamin deficiencies as a result of it, and her blood pressure is “dangerously high” due to kidney failure, according to Oakley. Eve’s kidneys are still healing.

Eve relapsed in March 2022, throwing the family another curveball. She was cured, but she relapsed in November 2022 and began cryotherapy, a treatment that employs intense cold to target cancer cells, according to Cancer Research UK. The Oakleys recently heard that one of Eve’s tumors has regrown.

“Eve also has a lot going on with the high blood pressure, the history of seizures, and the small gut condition,” Oakley explained. “She’s vulnerable to this gut twisting again and the same thing happening.”

Eve also has hearing problems and relies heavily on signals to communicate. Nonetheless, she continues to enjoy life.

Providing normalcy in the midst of illness
Eve is daring and noisy. She’d be the first in line for a roller coaster.

“She’s fearless and outgoing,” Oakley remarked. “She doesn’t speak much, but she communicates through sign language and other means.”

Ella is “more hesitant,” and she needs her parents’ love and support more than ever. While Oakley strives to engage her children in enjoyable activities, the cost of doing so occasionally prevents them from doing so.

When groups provide free tickets, Oakley strives to obtain them so that the girls can participate in some of the same events as their peers.

“There’s a farm maybe about 15 minutes from here that they adore and is reasonably priced,” Oakley explained. “They pet the animals and play in the large sandbox.”

Oakley uses social media to spread the twins’ story in order to raise awareness of childhood cancer. Even when things are difficult, she strives to remain positive.

“Never, ever give up. “We’ve been dealt a horrible hand,” Oakley explained. “I’m just trying to do something with it to raise awareness about the existence of children cancer.”

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