ELLA & EVE OAKLEY
#OAKLEYTWINSJOURNEY
GOAL MET!
Ella and Eve are 4-year-old twins from Marysville, PA. and we’re on a mission to raise
$10,000 to send Ella, Eve, and their family on a
dream trip to Disneyland
where they can make amazing memories together OUTSIDE the hospital!
“We are located in the United States. We live in Central Pennsylvania.
Ella and Eve are our only 2 children. They are twins and they are 4 years old.
Ella and Eve are twins, but they have very unique and very different personalities. Eve is very adventurous and full of personality. She doesn’t get scared of trying new things or activities. I think she will be the first to ride a scary roller coaster or check out a haunted house during Halloween. Nothing really seems to scare her, except bugs. She really dislikes any type of bug or insect. Ella is very shy and isn’t very open to unfamiliar activities. She scares easily. But once she gets to know someone or something, she can really warm up. Ella and Eve’s favorite things are being outside, going camping, visiting with family, playing in the sand, riding bikes, going to parks, taking long walks, reading, coloring, Mickey Mouse, Paw Patrol, and so much more. Ella and Eve inseparable. If they aren’t together, anxiety and fear will kick in. They’re doing everything together, including their fight against an aggressive cancer.
At just 10 days old, Eve stopped eating and became very lethargic. We rushed her to the hospital where her color faded way and all of her vitals began to drop. Originally, we thought she had some sort of terrible stomach virus. However, it turned out to be so much more than that. Many tests were ran, and everything was coming back inconclusive. She was rushed in for emergency exploratory surgery on her abdomen. It was determined that she had a severely twisted bowel. A portion of her bowel was removed and her intestines were brought forward where an ostomy bag was placed. She would then suffer septic shock, cardiac arrest, seizures, organ failure, infections, life support, blood clots, and so much more.
When the anesthesiologist woke me in the early hours, she explained that Eve was being rushed into emergency surgery. I had been curled up in an uncomfortable hospital chair next to her bed. I am not sure what happened at that very moment. I believe it was just too much for my mind to comprehend. And I passed out cold. The anesthesiologist shook me, and up I popped up again. I was trying to put together the sounds coming out of her mouth, but nothing seemed to make sense. It was all too much to bare. My heart was broken, and I knew we would have a very long and emotional road ahead.
This was extremely hard on our entire family. Watching your newborn in so much pain and not knowing if she would pull through, is absolutely heartbreaking. I was only 10 days postpartum, so my emotions were already skyrocketing in every direction. We had Ella at home and Eve inpatient. Eve was eventually flown two hours away, where she would remain for 6 agonizing months.
My husband and I would take turns as to who would be at home with Ella and who would be inpatient with Eve. We would use a train to commute back and forth.
While Eve was on life support, a routine eye exam revealed that there were tumors within her eyes. She was quickly diagnosed with an aggressive and rare form of cancer known as Retinoblastoma. (The hospital we originally brought her into, does not specialize in this type of cancer. So that is why she was flown to a hospital 2 hours away, where she could properly be treated). After Eve’s cancer diagnosis, we knew we needed to have Ella examined as well. Ella would also be diagnosed just days after Eve. Ella and Eve were approximately 3 weeks old at this point.
Eve was still in very poor condition when the cancer was found. She was hooked up to millions of beeping machines and she struggled daily with maintaining healthy vitals. But, the cancer was aggressive and was growing rapidly. Unfortunately, we had to make the agonizing decision to move her up to the oncology floor where she would begin aggressive chemotherapy. Ella would receive her chemotherapy outpatient.
Coping. I have no idea how we have and still cope with the heaviness and severity of our given situation. I guess, it’s never letting go of hope and also just taking things one day at a time. At one moment, I would find myself begging and crying for our twins to recover. And at the next moment, I would be angry at the world for dealing us this unimaginable hand.
We’ve had countless Chaplains, Social Workers, and Hospital Therapists who would visit us while we were at our twins’ bedsides. While we have so much gratitude for their support, nothing can really prepare for the heartbreak of your only 2 children carrying life threatening illnesses. When the sun rises in the morning, and you open your eyes, you are reminded that this, in fact, is not a horrible nightmare. It was, and still is, the reality of our daily lives.
Ella and Eve both went through six months of grueling chemotherapy which had devastating side effects. It was heart wrenching, to say the least. Eve also suffered multiple life threatening infections as well as a dangerous allergic reaction to the chemotherapy.
We thought there was a light at the end of the tunnel when they completed treatment. But that would not be the case. Ella would relapse 2 months out of treatment, the cancer had returned. And Eve’s cancer would remain stable for 4 years. However, in March of 2022, Eve would relapse with cancer, yet again, and return to treatment. She is currently back in active treatment.
Along the way, there have many other bumps in the road and mountains to move. When Eve’s organs failed, it would take a very long time for them to recover. To this day, her kidneys are still recovering as they received the brunt of the damage. This has caused severely high blood pressure and she needs constant monitoring and remains on medications to maintain a normal blood pressure.
She also suffered hearing loss while she was being treated for the organ failure and septic shock. She has a rare condition known as Auditory Neuropathy. She can hear, but the sounds may sound distorted. She has been fitted with hearing aids, but there is not guarantee that the will resolve the neuropathy. She has little speech, but she knows an abundance of sign language. She also currently receives one on one therapy twice a week for hearing and speech.
She is followed by a specialty team who monitors her weight. She’s tiny for her age. The removal of a portion of her bowel as caused some challenges for her. She has, what is known as, short gut syndrome. She cannot absorb certain nutrients, so we must supplement those nutrients.
Eve would relapse and the cancer would return in March 2022 (this year). It was another devastating blow to our family. We had become comfortable in our lifestyle and thought the cancer was stable and under control. When the oncology team advised us that Eve’s cancer had returned, I broke down in tears and sadness. With that being said, we were then faced with the difficult task of explaining to our twins that Eve would once again have to return to treatment. Ella constantly worries about Eve. Ella is aware that Eve has a lot more doctors’ appointments then she does. (Ella has many appointments as well) We are very delicate with what we tell them. We let them do the asking and come up with an appropriate response. Every time that Eve heads off to an appointment, Ella worries that she will not return. Ella asks constantly when Eve will be back. Ella knows that Miss Eve has cancer again, but she doesn’t quite understand exactly what cancer is. I have told her that Eve has a “boo boo” that we are trying to make better.
We are currently back in the midst of the fight. Ella and Eve have a rare gene mutation that makes them predisposed to this cancer. So neither of our twins are considered “out of the woods.” They go under anesthesia often. And they are also at risk for brain tumors, which are hard to treat if found.
Eve goes under anesthesia more than Ella, since Eve’s cancer had recently returned. Ella goes under anesthesia every 3 months.
While we are far from the end of this scary winding road, we never give up hope. We are also very aware that tomorrow is not promised. We try to embrace every moment that we have with them. Time is precious.
Ella and Eve have a dream to go to Disneyland. (not Disney World). We hope that someday we can make that a reality for them. They deserve the world.
Many simple dreams, like buying our first house, have been placed on hold while our twins fight cancer, together.
They have also just fought Covid together.”
Ella & Eve's goal has been met!
THANK YOU to everyone who supported
Ella & Eve’s campaign and helped their
DREAM come true!
Any funds raised exceeding Ella & Eve's goal will go towards our
DREAM BANK, to help more kids like them.
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We’ll continue to update this page as Ella & Eve’s story unfolds.
Ella & Eve’s story aired on Local 21 News!
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