By Liana Jacob
MEET the brave twin baby girls who were diagnosed with a rare form of eye cancer just days apart and have had to undergo TWELVE MONTHS of chemotherapy between them.
Stay-at-home-mum, Maryann Oakley (39), from Pennsylvania, USA, was diagnosed with Retinoblastoma at just six-months-old, a rare type of eye cancer that usually affects young children under the age of five. As a result, she has had to have one of her eyes removed and now wears a prosthetic eye.
In 2017, Maryann fell pregnant and six-weeks into her pregnancy, she and her husband, Nathan, found out they were going to have twin girls. Due to the likelihood of her passing down the retinoblastoma gene, Maryann decided to do an amniocentesis at 16-weeks, a medical procedure used in prenatal diagnosis of chromosomal abnormalities and foetal infections. The results revealed that their twins were both carrying the same gene.
In December 2017, a few days after their twins, Ella and Eve, were born. A few days after they were born, Eve stopped eating and was showing signs of lethargy. On January 1, 2018, Maryann and Nathan rushed her to the hospital, where they did exploratory surgery and found out her bowel had been severely twisted, a condition known as volvulus.
Shortly after the surgery her eyes were examined, and she was diagnosed with bilateral retinoblastoma. A few days before, her twin sister Ella had been diagnosed with the same cancer.
Ella and Eve have since undergone six months of gruelling chemotherapy each, which took a toll on the twins. Their journey is still ongoing, and the twins’ progress has been documented on social media by their mum.
“I had bilateral retinoblastoma shortly after birth; I was diagnosed at six months. My mum noticed a white cloud within my eyes and immediately took me to see a doctor,” Maryann said.
“I received laser therapy, no chemotherapy; my right eye had to be removed. No other member of my family had retinoblastoma, it was spontaneous.
“So, I knew there would be a chance that I could pass this onto our children. After long discussions and consideration, we decided that we would have one child of our own. We found out six weeks after conception, that we were carrying twins.
“I decided to do an amniocentesis at sixteen weeks. After weeks of waiting for the results, we found out that they were both carrying the Retinoblastoma gene.
“Shortly after birth, each twin showed tumours in their eyes, confirming the retinoblastoma did in fact develop. They were born at just over thirty-seven weeks.
“Eve had her twisted bowel prior to being diagnosed with tumours/Retinoblastoma, and almost lost her life due to the disconnection of her intestines and multiple other complications.
“It was only ten days of being home (after birth), Eve stopped eating and was showing signs of lethargy. We took her to hospital, where they did exploratory surgery, and located the severely twisted bowel.
“Shortly after, her eyes were examined, and a tumour was found. Everything was happening so fast. Every day we kept getting horrible news about our twins.
“There were no breaks and hardly time to breathe. This went on for months and I just kept clinging onto hope that everything would be ok.
“Eve had septic shock and contracted three infections while in the hospital, all while going through chemotherapy.
“Ella was at home preparing to begin chemotherapy. Our world was turned upside down. We had no idea whether Eve would survive or not and both children needed to endure chemotherapy.
“All of this happened shortly after birth, so we were never really able to enjoy them just being at home and healthy.
“Multiple holidays were spent apart as Eve was two hours away inpatient and someone needed to be at home with little Ella.”
Maryann says that while she was terrified, she had to keep a brave face on for her daughters, to help keep them strong and this was made easier through the constant support of friends, family and even strangers.
As well as battling cancer, Eve has also been diagnosed with auditory neuropathy, a variety of hearing loss in which the outer hair cells within the cochlea are present and functional, but sound information is not fully transmitted to the auditory nerve and brain properly.
Due to the demand of surgeries, tests and hospital appointments, Maryann has not been able to return to work and Nathan has returned to work part-time. They both decided to set up a Go Fund Me page for donations to help with the medical costs.
“Not knowing what was going to take place, we were terrified. I also carried a lot of guilt that this had happened to these two wonderful and beautiful babies,” she said.
“Having to see your child go through chemotherapy is so difficult. No one wants to see their new-born baby so sick or suffer. Handing off your child to a nurse for constant anaesthesia or procedures is something we will never forget.
“Not knowing how this will turn out was so petrifying and also having no control of the outcome is overwhelming in itself. Friends and family were very supportive and helped us in so many ways.
“But I couldn’t let them know how worried their Mum and Dad were. I try to make every day feel as normal and happy as possible.
“We posted pictures on social media about two months after birth. We kept their medical history between friends and family.
“When word started to spread that they were sick, we decided to post updates on social media so that others could receive updates on the twins.
“We were/are surrounded with love and support. All comments have been positive. These comments have really helped us along this journey.
“Retinoblastoma does not just go away with treatment. The eyes grow until they are five-years-old. So, the treatment and follow ups are ongoing.
“Honestly, some days are wonderful, and some days are quite tough. There is a lot of anxiety not knowing what the future holds for these two.
“My biggest worry is that a new tumour/s will develop, and further treatment will be needed. If so, what treatment will they need, we just don’t know.
“I wonder if they will be visually impaired. I worry a lot about Eve. Will she have further intestine issues? Will she be able to hear laughter, music, her sister talking to her, or Mummy and Daddy reading to her?
“I wish I could say it gets easier. It is so hard to see a child suffer. As we speak, my daughter, Eve, is currently undergoing anaesthesia having her tumours checked.
“While family and friends are very supportive and full of love, I still find times where I feel alone. I have found that using social media support groups has really helped me.
“Retinoblastoma is quite rare, and it is nice to be able to reach out to others who are in a similar situation. We make sure to enjoy every single moment with them. I hang on to hope. Hope is what got our family through all of this.”
For more information visit: https://www.instagram.com/oakley_twins/
Go Fund Me link: https://www.gofundme.com/oakley-twins-medical-fund