“Eve and Ella were born at 9 p.m. (twins) on December 19th, 2017. We were so happy and overcome with joy. They were both born at 37 weeks and 2 days which is great considering twins are often born early. The first few days in the hospital were tough and overwhelming. They had jaundice and needed to be placed under lights to assist with resolving that issue. We thought that was a difficult situation but were unaware of what was to come. After three long days, we brought them home.
Wow, it was a lot the first couple of days. I didn’t realize how tough it is to care for newborn twins! No sleep, constant feeds, changing diapers, and caring for them round the clock. I actually now realize how easy that time was and had know idea as to how quickly everything would change.
On day ten little miss Eve stopped eating and was very lethargic. We rushed her to the hospital not realizing she wouldn’t be returning home. She wouldn’t be returning home that day, week, or even month. On New Years Eve my husband brought Eve to the emergency room where her vitals quickly began to deteriorate and her color faded. This was a life changing moment for my husband as he watched our 10-day old daughter fight for her life. Watching the doctors take her away to the intensive care unit where we wouldn’t see her again for several hours was just as heartbreaking. My husband and I were devastated and scared. We had no idea what was wrong with little Eve. I had originally thought it was just a virus so I was completely flabbergasted. We didn’t know what to say to each other and I was still recovering from my C-Section. It was an immense feeling of helplessness, worry, sleepless nights, no eating, and constant crying. Eve’s very first night in the hospital doctors thought it might be meningitis and began treating her with antibiotics. Little did we know they were completely wrong. But at least we knew she was in a good place and being taken care of.
My loving sister immediately drove two hours to my house so I could go down and see my little Eve. I was shocked and heartbroken when I saw her she was so frail. She was moaning in pain and her eyes were sunken. I will never forget the sound of the horrible wails she let out because she was in so much pain. I immediately broke down and cried loudly. Her amazing nurse quickly approached and hugged me with loving arms. She began to cry as well. I laid beside her that night. She said, “I’m going to hold you and cry along with you.” And she did. I was sad when her shift was over. I didn’t see her again the rest of the time Eve was hospitalized. I’ve always wanted to see her again and thank her for her support during the absolute worst time of my life.
On New Year’s Day 2018, the surgeons performed emergency exploratory surgery on her abdomen. They discovered it was a volvulus which is when a loop of intestine twists around itself and the mesentery that supports it. This results in a bowel obstruction. The surgeon removed that portion of the bowel and she was provided an ostomy bag. 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 I did not know what was actually taking place. I was confused. I had no idea she was in cardiac arrest. So many doctors came running in. They pulled the curtain so I couldn’t see her I just heard the doctor yelling ‘up the medication quickly, up it now! She’s still not stable!’ Another doctor came behind the curtain and was trying to explain that they were trying to stabilize Eve.
Everything he was saying to me just went in one ear and out the other. It reminded me of the teachers from the Charlie Brown cartoon. Just mumbled voices. It was not making sense to me. They were finally able to stabilize her after what seemed like a lifetime. The doctor actually asked if I would like to leave the room but I refused. I would not leave her side. Later I remember sitting with my husband in the hospital cafeteria and sobbing. How did all of this happen so quick? Will our lives ever be the same? How are we going to handle this? Will Eve survive? It was just an overwhelming flood of emotions. Not knowing if your child is going to live is the most unforgettable heart wrenching feeling, I just wanted to take all of the pain and suffering away from her. Ella was a home being cared for by my sister and we knew she was in wonderful hands. Once Eve was stable enough my husband and I then began our dreaded shifts back and forth between each twin.
Eve was only able to withstand a few ml a day of fluids through a feeding tube. She was hooked up to more machines and equipment that I can count on both hands. Shortly after she suffered many complications from her bowel surgery including severe septic shock which also led to kidney and liver failure. She was very sick. I remember asking one of the doctors if she was going to pull through. The doctor’s response was’ ‘I hoped she would have pulled through this easier. This isn’t looking so great.’ At that point, I once again broke down. My husband had to come down and take my place at the hospital. He was at home caring for Eve’s twin, Ella. I returned home to be with her.
Approximately two weeks after Eve’s bowel surgery both twins were diagnosed with a rare eye cancer known as Retinoblastoma. Retinoblastoma (Rb) is a rare form of cancer that rapidly develops from the immature cells of a retina the light-detecting tissue of the eye. Eve was diagnosed while in the hospital and Ella was then diagnosed shortly after. Eve had so many CAT scans and MRIs when the was in the hospital and at one point they thought she had severe brain damage. This is how the found the Retinoblastoma tumor within her eye. When they told us it was over the phone. I really don’t think there is any GOOD way to find out your child has cancer. My father, their Grandpa, was down with Eve when the ophthalmologist called and broke the awful news to me. My husband and I were switching out shifts between being with Eve in the hospital and being with Ella at home. So, thank goodness my father was so willing to be there with her during this time. 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 her eye exam. That’s when we were again shattered by the news that Ella had tumors in BOTH eyes. Again every single day we were getting such devastating news. When will this ever get better? Will it ever get better? Each time we received terrible news we cried endlessly. We felt hopeless, helpless, and completely lost. We were beaten down so badly and our twins were beaten down as well. Things would never be the same. ‘Your children have cancer.’ Words from the doctors you will never forget and still ring in your ears every day.
Ella’s diagnosis required treatment from two separate doctors in Philadelphia over two hours away from home. I remember Ella having her first exam on a Monday and by Wednesday we were traveling back to begin treatment. It was a difficult process traveling over two hours away not knowing how long we would be there or how treatment would begin. While beginning Ella’s first round of chemotherapy we found out Eve was about to board a helicopter and be flown down to the same hospital in Philadelphia. It’s so hard receiving the news that your child is about to be transported via helicopter and you cannot even be there with her. We felt completely helpless. My husband and I looked at each other in a loss for words. I held my husband’s hand and he squeezed mine as tears rolled down our cheeks. The doctor tried to console us but we were not consolable. Day after day we just kept receiving horrible updates and diagnosis’ about Ella and Eve. All of this was just so hard to take in and I felt as though I couldn’t breathe. We had no control over the situation. Ella would need six rounds of dreaded chemotherapy and she got really sick and lost her hair. I distinctly remember the first day she received the chemo I just held her and cried. No parent wants to see their child suffer.
Eve on the other hand was still very ill from her twisted bowel. When in Philadelphia they started her off in the NICU. This is where she was closely monitored while recovering from septic shock and many other complications. We placed the chemotherapy on hold until she was well enough to withstand it. After monitoring the tumor in her eye the doctors discovered it was growing. So there was no more waiting and Eve was quickly moved up to the oncology floor where she too would need six rounds of chemotherapy. Luckily we absolutely love Eve and Ella’s oncologists. They do not just have one doctor, they have a team of doctors. I do not understand how they can do their job treating pediatric cancer. I don’t mind taking the 2 hour trips as often as we do because of them. I know my twins are in the absolute best hands and that, in itself, provides me and my husband some comfort and reassurance.
Eve was two hours away in Philadelphia while Ella was at home. My husband and I did not spend a single night in the same house for six months. One of us would need to stay with a twin. This consisted of taking turns and a lot of train rides to Philadelphia. It’s so difficult because when you are with one baby you miss the other and feel so guilty for not being there. My husband and I had a relationship via FaceTime. That was our only option. We talked pretty much every hour, 24 hours a day including texting. We stayed strong and worked as a team for our twins.
Eve started her chemotherapy shortly after being moved to the oncology floor. There is so much anxiety surrounding chemotherapy. Will they get sick? Will they get infections? Will they survive? My husband and I were so overwhelmed with sadness and emotion. We didn’t know if this would ever end or if they would ever recover. During Eve’s second round of chemotherapy she turned blue. Doctors came in and quickly stopped the treatment. It would be discovered little miss Eve had an allergic reaction to one of the chemo drugs. We were then approached with another very difficult decision. Do we continue to give her chemotherapy treatment? Unfortunately we didn’t have much choice and we needed it to fight this aggressive cancer. We went forward with the treatment at a lower dose and she was watched closely while given each treatment.
When we thought things couldn’t get much worse, they did. Eve contracted three infections while in the hospital. Two were from her ostomy bag leaking. Her output entered into her central line which lead to an infection. Dad and I were so very upset about this situation. How could this happen? The third was a staph infection. This delayed her being discharged as she would need three weeks of antibiotics. What another unfortunate blow! This poor little baby had been through so much and now these awful infections. It was such a terrible setback. We were very upset and frustrated to say the least.
Eve finally returned home after being in the hospital for six long months. Eve and Ella only saw each other a handful of times prior to Eve returning home. When we brought Eve through the door we were so excited to see how they would react. They were curious of one another. Who is this new baby? They stared at each other for hours, it was amazing. I just tried to hold back the tears of joy but of course I could not. It was another flood of emotion for both my husband and me. Eve and Ella would do their last round of chemotherapy together as a team. Taking care of two infants while going through chemotherapy is quite unimaginable. We just kept praying there was a light at the end of this very dark tunnel.
After Eve returned home there was a lot of care that needed to be done. She was on a feeding tube 24 hours a day, had an ostomy bag, and was on a large amount of medication. I must credit my husband on this. He was a pro with changing her feeding tube as well as her ostomy bag. We did this all on our own which meant no sleep. We tried for a nurse but none were available in our area and most places were short staffed. We were 24 hours parents of twins but we also gained the role of medical professional. My husband and I are both ‘take charge’ type of individuals. If one of us isn’t doing something correctly we are sure to voice our opinion about it. Sure we had a lot of disagreements but we both wanted the best for them and we worked through it. We still find ourselves in similar situations today but we have better learned how to cope and handle these situations in a more positive way. We’ve learned a lot from our twins. We’ve also learned a lot from one another.
Eve received her bowel reconnection surgery in August of 2018. This meant no more ostomy bag! We were just over the moon with this! Her feeding tube would remain in until December of 2018. Both of these were huge milestones for miss Eve. Ella on the other hand had a new eye tumor pop up in the summer of 2018. Another blow we needed to cope with. Luckily, the tumor was outside of her line of sight and doctors were quickly able to laser it.
Eve was also recently diagnosed with a rare hearing disorder known as Auditory Neuropathy Spectrum Disorder. This means her outer ear functions normal however the nerve within her ear is not firing properly. She can hear but everything sounds distorted. Some individuals do well with this while others do not. She will eventually be fitted with hearing aids and the topic of cochlear implants have been brought up. How did she get this? Doctors think it may stem from the septic shock and multiple antibiotics. This requires yet another trip to Philadelphia each month where she is placed in a sound booth and her hearing is tested. Now we are just left to wonder. 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. She’s beaten so many odds thus far, I have no doubt this is just a small hurdle and she will do amazing.
So what does the future hold for our twins? The truth is we have no idea. Ella and Eve are by no means out of the woods. Retinoblastoma is a very tricky and aggressive cancer. The eye grows until the age of 5. We make two hour trips for routine eye exams under anesthesia. This is to monitor for new tumors or tumor growth. If new tumors or growths do arise a treatment plan would then be arranged. This can include radiation, chemotherapy, laser treatment, or even eye removal. This does not include the frequent trips we make for miss Eve to be followed by her GI Team, Audiologists, and Speech Pathologists. The twins also need regular sedated MRIs to monitor for brain tumors. If a brain tumor would appear the prognosis is quite grim. There is not a day goes by that I don’t worry about their futures. It is life consuming. I have this constant feeling of despair and anxiety as to how they will progress.
My husband works around their many doctor appointments. I have not returned to work. Ella and Eve are not up to date on their vaccines as chemotherapy prevented it. Their immune systems remain suppressed for up to a year after chemotherapy as well. They are currently still on their cancer journey. Ella will be examined under anesthesia this month and Eve will be examined in April. This means high anxiety for Dad and me. We really just hang on and hope for the absolute best results. One step at a time, one day at a time.
A lot of people have ask, ‘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 my sister said, ‘You are often on autopilot.’ Somehow, somewhere as a parent you are given this amazing strength you never knew existed. We keep a constant brave face for this little duo. We treasure every single moment with them. Some may think we are an unfortunate family. However I find myself looking at these two and think ‘Wow, we are so lucky to be blessed with these little angels!’ They are so happy, intelligent, energetic, outgoing, and down right wonderful little ladies!! They love to sing and dance. Something that sticks with me, I love the Dave Matthews Band. While pregnant I would play this music to help sooth my soul and now every time they hear it they light up with joy and begin to sing and dance. I also love The Ellen Show and whenever her segment with babies comes on they light up and laugh hysterically. See it’s precious and beautiful moments such as these that I will hang on to forever. No one can take that away from us. They are inseparable and follow each other everywhere! We do not take a single moment with these two for granted because we just never know what the future holds. We love them so very much.”
This story was submitted to Love What Matters by Maryann Oakley of Harrisburg, Pennsylvania. You can follow their family’s journey on Facebook and Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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