Few things are more devastating than learning your child is chronically ill. But finding out that you have two sick children is especially heartbreaking. Mary Oakley and her husband Nathan, of Harrisburg, Pennsylvania, are among the few parents out there who know what that experience is truly like. Their 2-year-old twin daughters, Eve and Ella, were diagnosed with retinoblastoma at just 15 days old. And while her daughters are now stable, Mary says her girls are still considered high risk.
Mary tells CafeMom that when doctors first discovered the rare eye cancer, it was only Eve who was diagnosed.
The girls were born on December 19, 2017, but after 10 days, Mary says she noticed that Eve began showing signs that something was wrong.
"Eve came home for 10 days, stopped eating, and was in terrible pain," the mother recalls. "[I] took her to ER on New Year's Day [2018]."
According to a GoFundMe page created for the girls, Eve was then admitted to the Penn State Children’s Hospital Pediatric Intensive Care Unit. There, an exploratory surgery revealed that Eve had a volvulus, which occurs when a portion of intestine or bowel becomes twisted around itself, causing an obstruction. The condition is also called twisted bowel syndrome. As soon as doctors discovered it, they quickly removed a part of her small intestine.
But Eve developed septic shock shortly after the procedure, and remained on life support for the next 10 days.
Eve was puffy and swollen while her body fought to heal itself. She showed low organ function, which required numerous intravenous medications to keep her vital signs stable. By day 11, she finally turned a corner — but sadly, while Eve had been fighting on life support, doctors made another upsetting discovery: they found tumors in her eye.
"The doctors saw a white cloudiness in Eve’s eyes," Mary recalls. "We knew Ella had to get checked ASAP."
When they checked, the parents got the heartbreaking news that Ella had bilateral retinoblastoma and had one small tumor growing in each of her eyes. Eve was soon diagnosed with the same condition.
On January 18, 2018, Ella began the first of six rounds of chemotherapy.
At the same time, Eve was seen by an ophthalmologist, who recommended that her parents transfer her to the Children’s Hospital of Philadelphia to continue her abdominal recovery and begin treatment for her own case of retinoblastoma.
On the day that Ella began chemo at Penn State Children’s Hospital, Eve was flown via medical transport to CHOP, and admitted to the NICU for recovery and treatment.
As a result, the twins were each in different parts of Pennsylvania for months.
In total, both girls went through six grueling months of chemo, during which Mary says she and her husband took turns being close to each child, who were two hours apart.
Both girls were extremely sick during their treatment, Mary recalls, as they both had trouble eating and would vomit throughout the day.
"Eve contacted three infections while on chemotherapy," she says. "And she needed countless blood transfusions."
"It was like living in a nightmare," the mom adds. "We would only sleep for a few hours each day. We cried a lot, we still do."
At 6 months, the twins ended chemotherapy, which is protocol for infants with retinoblastoma.
But Mary tells us that both girls are still considered very sick. The girls, who turned 2 in December 2019, still have tumors in their eyes, but they are technically considered stable.
"If new tumors arise, they will move onto other treatments," Mary says. Those other treatments could include cryotherapy (freezing), radiation laser therapy, or chemotherapy directly into eyes, which is known as IAC.
"[It's] very dangerous," the mother shares. "Ella had a new tumor in August 2018 and they lasered it. Which is why I always stress, they are at high risk for new tumor activity until the eyes stop growing."
But that won't happen until the girls are 3 to 5 years old, she says.
Needless to say, it's been a difficult few years for the Oakleys, and Eve and Ella's medical needs have certainly taken a toll on the family.
Mary says her husband works three jobs to help pay for their medical care. And at its worst, Mary says her daughters' double cancer diagnosis was "unbearable." But in the end, they figured out a way to make life as "normal" as possible for Eve and Ella.
"They love Ellen DeGeneres and that was the first time we heard them laugh," she tells CafeMom, of listening to her daughters giggle while watching the comedian's talk show. "They are inseparable, our twins. Best friends."
But that doesn't mean the parents don't worry for the future. Mary says the family still struggles, because they have "no idea what this cancer is going to do … or when it’s going to come back."
"We always put a brave face on for our twins, always," she continues. "And now they are getting old enough to realize what a doctor's office or hospital is, and it terrifies them. And breaks our hearts."
"A lot of dreams are currently on hold," she adds. "Buying a home. Bringing them to California someday to see the ocean. Buying a van that’s easier for travel two hours to the hospital."
But the mom says she hopes that by sharing her story, she can encourage others to keep going even when things seem to be at their worst.
"Always hang on to hope," she says. "That’s what we did, and are still doing today."
