There are moments in life where being strong for your loved ones is the only option you have. Imagine giving birth to healthy twins only for both of them to be diagnosed with the same cancer just months after birth. In this Meet the Fam, we meet little Eve and Ella who show the world that the strongest things can come in the smallest packages. The Oakley family inspires us to remain optimistic during the toughest times.
Tell us about your family
Ella and Eve were born on December 19, 2017. They were happy and healthy little babies. They made it almost full term, which isn’t often the case for twins. Twins will often come early, but Ella and Eve we quite happy and content in my belly.
Ten days after they came home, Eve was very lethargic. We took her to the emergency room where her vitals quickly began to deteriorate and her color faded. This was a life-changing moment. Our 10-day old daughter was fighting for her life.
She had surgery for a severely twisted bowel. When she came out of surgery, she was on life support for 11 horrible days. As soon as they brought her into the room she went into cardiac arrest. Everything was happening so quickly.. She then suffered septic shock, multiple infections, and kidney and liver failure. She needed to be airlifted to a hospital in Philadelphia.
Shortly after this, both Ella and Eve were diagnosed with a rare, aggressive eye cancer known as retinoblastoma. Eve had so many CAT scans and MRIs when she was in the hospital and at one point they thought she had severe brain damage, but this is how the found the tumor within her eye. When we found out about Eve’s retinoblastoma, we knew we needed to get Ella examined as soon as possible. I brought her to Philadelphia for an eye exam and we were again shattered by the news that Ella had tumors in BOTH eyes.
Both twins endured 6 rounds of grueling chemotherapy. Eve was inpatient in Philadelphia, which is 2 hours away. One of us would need to be at home with Ella, while the other was in Philadelphia with Eve. There was a lot of traveling for the first 6 months, but we somehow made it work.
Eve and Ella only saw each other a handful of times prior to Eve returning home. We were so excited to see how they’d react when they were reunited. They were curious of one another. Who is this new baby? They stared at each other for hours, it was amazing. We cried many joyful tears. Eve and Ella would do their last round of chemotherapy together as a team. Taking care of two infants going through chemotherapy is unimaginable. We just kept praying there was a light at the end of this very dark tunnel.
Eve was also recently diagnosed with a rare hearing disorder known as auditory neuropathy. This means her outer ear functions normal however the nerve within her ear is not firing properly. She can hear but everything sounds distorted. We are still doing tests on this to see how severe it is. Will Eve hear us sing? Will she be able to communicate with others? Will she have long conversations with her sister? Unfortunately we will have to wait and see.
Despite all of this, both twins are doing well. Since the eyes grow until age 5, they will NOT be considered cancer free until then. They receive constant follow ups and exams under anesthesia. They are still at high risk for tumor growth and new tumors. They must also be monitored for brain tumors, which are fatal if found.
A lot of people have asked, ‘How do you handle all of this?’ The truth is, we are not left with much of a choice. You will do anything to make sure your child survives and is healthy. As a parent, you are given amazing strength you never thought possible. Some may think we are unfortunate… however I find myself looking at these two and think ‘Wow, we are so lucky to be blessed with these little angels!’
They are very smart and happy little ladies. They love spaghetti and follow each other everywhere. They love Ellen DeGeneres and Dave Matthews Band. This really helped them during their horrible chemotherapy. They also love when we read books to them. They are warriors.
What is your favorite moment you’ve captured of your girls and why?
This is a picture of Ella (left) Eve (right) They were both undergoing chemotherapy and they hadn’t seen each other since Eve went into the hospital. Ella had just finished up her chemo for the day, so we brought her over to see Eve. Dad and I were just so overjoyed and emotional to see them together for the first time in months. As you can see from the picture, they were excited to spend a little time together. They spent about 2 hours together that day. After that, they wouldn’t see each other again for several months. We are very fortunate to have both of them home now and they are both meeting their milestones. We have therapists who come to our home daily.
If you could give yourself once piece of advice before your children arrived, what would it be?
Some days will be really hard. Some days will be perfect. Don’t look back on the past, and you cannot control what will happen in the future. Take it one day at a time. Enjoy every single moment with your girls. They will be the best thing that has ever happened to you.
What upcoming milestones are you looking forward to?
Every single one. They are 15 months old, so they still have a lot ahead of them. I look forward to them talking, learning to read, singing, dancing, playing, fighting, smiling, and so much more. They are so very smart and we look forward to making them as happy as can be.
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