Mom's 2-Year-Old Twin Daughters Both Diagnosed With Cancer

Mar 02, 2020 by apost team

Maryann Oakley and her husband Nathan are the parents of two-year-old twin daughters, Eve Elizabeth and Ella Rose, who have both been diagnosed with eye cancer. After Eve was done with rigorous abdominal surgery, both she and her sister Ella were diagnosed in January of 2018 with Retinoblastoma at the Children's Hospital of Philadelphia in coordination with Wills Eye Hospital. In an interview with apost.com, Maryann gave an inside look as to what it's like to be the parents of toddler twins diagnosed with cancer.

It was January 1st, 2018 when parents Nathan and Maryann started having medical issues with one of their twin daughters, Eve Elizabeth. According to an interview with apost.com, their daughter Eve stopped eating at ten days old because "she was in excruciating pain."

What started with an abdominal surgery with their one twin, quickly turned into a cancer diagnosis in both twins. In an interview with apost.com, Maryann recounted how hectic everything was and how quickly it all started:

"We brought her [Eve] to the hospital. There, they performed emergency surgery on her abdomen, and a twisted bowel was found. She suffered septic shock, organ failure, seizures, infections, cardiac arrest, and stayed 6 months inpatient. While Eve was on life support, her eyes were checked for responsiveness. That is when a tumor was located and we needed to have Ella checked. Ella was diagnosed as well just days later."

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The tumor that the doctors found in Eve's eye turned out to be Bilateral Retinoblastoma. According to the U.S. National Library of Medicine, this rare eye cancer affects roughly 250-350 children annually in the United States. The cancer diagnosis came after Eve survived a life-threatening twisted bowel condition, cardiac arrest, septic shock, and underwent surgery all due to a leaky intestine.

It was because of her critical condition that doctors found the eye tumor and ended-up diagnosing both twins with Retinoblastoma before their first birthday.

Maryann opened-up about what it was like after being notified of the diagnosis:

"We were devastated to say the least. Every day was like living in a nightmare. We didn’t think Eve was going to survive. We only slept for a few hours a day for months. We ran on autopilot for a very long time."

Needless to say, Maryann and Nathan's lives have been altered significantly since the twins have been diagnosed with eye cancer. Maryann reflected on how it has changed their schedules:

"Before their birth and diagnosis, both my husband and I worked full-time careers. He is a video and sound engineer. I was a therapist working with adults with Autism. My husband had to take leave without pay for 6 months after their birth. I have not been able to return to work as they are still medically fragile and I provide their medical care. My husband now works 7 days a week so we can make ends meet. I will not be able to return to work for quite some time."

Maryann and Nathan have set-up a GoFundMe page to help them with the medical costs associated with the twins as well as the fact that Maryann has not been able to work due to their fragile condition.

Maryann told apost.com just how different her daily life has become:

"Normal days can vary. Eve and Ella both have regular doctors appointments, which are often under anesthesia. This is to check for tumors and activity. If we get a day at home, both twins receive early intervention services. This includes physical therapy, speech pathology, and a hearing specialist. Days are also filled with administering medications and monitoring fluid intake. Eve can dehydrate easily since a portion of her bowel is removed."

Since their diagnosis, both of the twins have undergone chemotherapy as well as MRI's that check for brain tumors, but are risky for those with Retinoblastoma.

According to an update posted on behalf of Maryann by the GoFundMe on January 6th, 2020, because of Eve's previous condition and procedures, she has developed auditory neuropathy, which affects her inner ear and its messaging to her brain. Eve has also not developed much speech and both of the twins are still at risk for new tumor activity.

The parents have since created both a Facebook and Instagram page so others could keep up with the twins' medical journey. Despite all that the twins have been through at such a young age, Eve and Ella are still seeing doctors frequently. Maryann said:

"Ella and Eve are doing well. They are so very happy and are inseparable. While they are hanging in there, they still have a long road ahead. They are at extremely high risk for new tumor activity. At least until age 3-5. They must endure doctors and procedures often. It is not easy for them."

Despite the challenging journey the parents and twins have endured, mother Maryann still retains hope for her daughters Eve and Ella. She said:

"I just say to never give up on hope. Hope was all that we had and still hang on to. Others see us as a strong family, but we don’t feel that way. This journey has been very hard on our family. But we continue to our on a brave face for our twins."

We hope the twins recover to full health. What do you think about Eve and Ella's journey? Do you know of any parents who have such strength like Maryann and Nathan? Let us know your thoughts and be sure to pass this on to others so they can give their thoughts as well.