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Challenge: NICU Parenting

NICU Life: Our twins diagnosed with cancer at just 1 month old.

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Eve and Ella were born at 9PM (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 the issue. We thought that was a difficult situation, but were unaware of what was to come. After 3 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 all around 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 dramatically change.

On day 10, 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 month. I remember talking with my sister and saying, “Oh, it’s probably just a bug.” 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. Another tough moment was watching the doctors take her away to the intensive care unit, where we wouldn’t see her again for several hours.

My loving sister immediately drove 2 hours to my house so I could go down and see little Eve. My sister would stay with Ella. 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 awful sound of cries she let out because she was in so much agonizing pain. I immediately broke down and cried out loud. Her amazing nurse quickly approached and hugged me with loving arms. She began to cry as well. I laid beside her that night. It felt like the longest night of my life.

On New Year’s Day 2018, the surgeons performed emergency exploratory surgery on her abdomen. They discovered it was a volvulus. A volvulus is when a loop of intestine twists around itself and the mesentery that supports it, resulting 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. 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.

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 also had uncontrollable seizures, which they believed caused severe brain damage. 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 for her.” 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 Ella.

Approximately 2 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.

Ella’s diagnosis required treatment from two separate doctors in Philadelphia, over 2 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 that Eve was about to board a helicopter and be flown down to that 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. Day after day, we just kept receiving horrible news about Ella and Eve. All of this was just so hard to take in. I felt as though I couldn’t breathe. We had no control over the situation. It was so hard to believe one day they are at home, the next there are terribly sick.

Ella would need 6 rounds of dreaded chemotherapy. She got really sick and lost her hair. I distinctly remember the first day Ella received 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 6 rounds of chemotherapy.

Eve was two hours away in Philadelphia while Ella was at home receiving outpatient care. My husband and I did not spend a single night in the same house for 6 months. One of us would need to remain with each 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.

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 that 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 3 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 infection was a staph infection. This delayed her being discharged, as she would need 3 weeks of heavy antibiotics. What another unfortunate blow. This poor little baby had been through so much, and now these awful infections. It was such a terrible set back.

Eve finally returned home after being in the hospital for 6 long months. Eve and Ella would do their final round of chemotherapy together as a team. Taking care of two infants while going through chemotherapy is quite unimaginable. We just kept praying that there was a light at the end of this very dark tunnel. Eve was constantly throwing up while Ella refused to eat.

When 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 hour parents of twins, but we also gained the role of medical professional.

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 a huge milestone for Miss Eve.

Ella had a new tumor pop up in the summer of 2018 as well. Another blow that 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 recently diagnosed with a rare hearing disorder known as Auditory Neuropathy Spectrum Disorder. This means that her outer ear functions normally, however, the nerve within her ear is not firing properly. She can hear, but everything may sound 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 aggressive cancer. The eye grows until the age of 5. We make 2 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. I must say, handing off your child to an anesthesiologist is very difficult. Seeing him/her lead your daughter off to an operating room is gut wrenching and miserable. Waiting in the waiting room while sobbing is unforgettable. The twins also need regular sedated MRISs to monitor for brain tumors. If a brain tumor would appear, the prognosis is quite grim. There is not a day that 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 Ella and Eve are currently still on their cancer journey. We have 4 tumor checks under anesthesia within the next 3 months, that is how closely they are followed. This means high anxiety for Dad and I. 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, a parent is given this amazing strength that 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 are inseparable and follow each other everywhere!! They love to sing and dance. Something that sticks with me, I love Dave Matthews Band. While pregnant, I would play this music to help sooth my soul. Now, every time they hear it, they light up with joy and begin to sing and dance. I also love The Ellen Show. 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.

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 and hold them close every single day.

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