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Our twins’ cancer versus a pandemic

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"How do you handle all of this?" That’s a question I am often faced with. When you are a mother and your only two children are given a cancer diagnosis, you do not have a choice. You have to handle it, and you have to fight. Fight for your children’s lives and enjoy every moment you have with them.

I am a mom and a cancer survivor. I do not share that often. Why? Because I am trying to focus on the HERE and NOW. While having a casual dinner with my father, many years ago. He said to me, ‘You know what I think Heaven is? I think it’s here. I think it’s right here and right now.’ I try to live by that in my everyday life with our twins. I am by no means ashamed of being a cancer survivor. In fact, I am proud I was strong enough to win my battle.

But I like to keep my focus on Ella and Eve. This is their fight now. And this is their story. My mom, Ella and Eve’s grandmother, passed away a few years before their birth. She was not a survivor of cancer. I am very proud of her for putting up such a courageous and remarkable battle. Her body just wasn’t strong enough anymore. She was tired. She passed quietly on a brisk September afternoon. I miss my mom. And there will always be a hole in my heart from her unbearable loss to cancer. I wish she could’ve met her grandchildren.

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I don’t know why our family has been plagued by cancer. I don’t know why we have suffered so much sorrow, loss, and grief. Maybe, Ella and Eve were chosen to fight because I had so much personal experience with cancer. Maybe I just tell that to myself to get through each day. Some days are absolutely amazing, while others are just too hard to grapple. But, we always put on a brave face for our twins.

Ella and Eve were born on December 19, 2017. They were happy and healthy little girls. We were over the moon. They did have mild jaundice, but we were able to bring them home after 3 days.

At about ten days old, Eve stopped eating and became very lethargic. My husband rushed her to the hospital where her vitals dropped and her color began to fade away. We originally thought she had a stomach virus, but it turned out to be much more than that. We were told it was possibly meningitis, and treatment with antibiotics began. After that proved unsuccessful, we were told she would need to go for surgery. How could this be happening? I was just holding her hours prior in my arms, where she was safe. Everything seemed to go black. Our worlds were crashing. It is an absolute shock and nightmare to know your child could possibly be dying.

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After exploratory abdominal surgery, Eve was diagnosed with a twisted bowel known as a volvulus. Her bowels were disconnected and brought forward, where an ostomy bag was placed. Eve then suffered septic shock, cardiac arrest, organ failure, life support, seizures, countless infections, transfusions, and so much more. She almost lost her life, on multiple occasions.

When they first brought her out of surgery and back to her room, Eve began to deteriorate. I, mom, was in the room. The doctors were swarmed around her in panic. I had no idea what was going on, and the doctors rushed me behind a curtain, where I could no longer see her. Everything was foggy and the voices in the room sounded like Charlie Brown’s mother. Nothing was making sense. I didn’t realize she was slipping away from us. Dying from behind a curtain. It was devastating. The only thing I remember hearing was the doctor screaming to give her more. I was told they were administering a life-saving medication to bring her lifeless body out of cardiac arrest. She slowly pulled through, but this winding unending road was only just beginning.

She would end up spending 6 months in the hospital, 2 hours away from home. You never prepare for your child to be sick. You may read all of the What to Expect books, but nothing prepares you for a heartbreaking diagnosis. We thought we were going to pull through as a family, but the gut-wrenching bad news just kept flooding in. My husband and I took turns with the twins. One would be 2 hours away in Philadelphia with Eve, while the other remained at home with Ella. We were on autopilot with no end in sight.

While Eve was in in-patient care, at about 1 month old, a white cloud was located within her eye. She was examined, and it was determined that she had an aggressive form of cancer known as Bilateral Retinoblastoma. We then knew her twin sister, Ella, would need to be examined immediately. For the second time, in days, we were given another devastating cancer diagnosis. Ella had cancer as well. We had two children diagnosed with cancer. And the news was broken to us by two completely different doctors, as each child was at a different hospital.

You are in a cold room. And as pleasant as the doctor may try to keep it, it’s nothing pleasant at all. You are bombarded with long words you’ve never even heard of or considered learning. You are told your children’s concerns are now labeled. 1. Save her life 2. Save her eyes 3. Save her sight. You are told this can lead to terminal brain cancer. My husband and I were broken and shattered by this news. We couldn’t muster the words to say anything to one another: it was written all over our faces and the steady stream of tears running down our cheeks.

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Bilateral Retinoblastoma is a mutation affecting cells within their little bodies. They are now predisposed to this cancer. In other words, there was a 90 percent chance they would develop cancer. And since they are predisposed, the likelihood of this cancer returning, well, it is high. It is high until the eyes stop growing. This will usually happen until the age of 5. Ella and Eve are now 2. And after that, Ella and Eve are at risk for secondary cancers. They have a long and frightening road ahead.

I am told this is often more traumatic for the parents, rather than the children. As they will not remember the trauma they have suffered. I’ve suffered more now than I’ve ever suffered in my entire life. And I do hope it’s more traumatic for the parents. I do not want them to be reminded of the pain and devastation they have gone, and are still going through. I couldn’t sleep, and I couldn’t eat. But that now felt irrelevant to me. My goal was to somehow muster up the strength and courage for our twins. Luckily, we have a few close family members and friends who live nearby. They were always a phone call away if we needed food or any other necessities.

Ella and Eve both completed chemotherapy as well as many other treatments. Chemotherapy was one of the hardest parts of treatment. And they may possibly have to go through it yet again. They lost their hair, their appetite, and their joyful personalities we had grown to love. They were very sick and couldn’t keep food down. We were told about CBD but knew little about it. I was hesitant to explore it, but could no longer allow my children to suffer. I thought, ‘I don’t want my children to be high.’ But after doing some research, I realized I just wasn’t educated enough on the topic.

Ella and Eve were the youngest in our state to gain their Medical Marijuana Cards. Ella and Eve use pure CBD oil. They do not get ‘high.’ After the first dose, we knew this was a game-changer for them. They were in less pain and able to drink their milk once again. It honestly felt like a miracle. We informed every last one of their doctors the decision we worked tirelessly on. And, to our amazement, their phenomenal doctors welcomed it with open arms. So when you hear others talk about medicinal marijuana and cancer, please be empathetic. It could really be changing their lives, as it did ours.

We still travel 2 hours to Philadelphia for anesthesia and exams. This is often, more often than we would like. It’s tough on them. They are just so scared when it’s time for the doctors to whisk them away. They have petrified looks in their eyes, which are unforgettable. And the anxiety for us is excruciating. Eve also has extremely high blood pressure. We are attempting to manage it with multiple medications. She has also been diagnosed with an extremely rare hearing disorder known as auditory neuropathy. It is so rare, many doctors are unfamiliar with how to manage it. This was most likely caused by the medications given to her while she was on life support. Basically, the medications used to save her life robbed her of some hearing capabilities. This is still something we are trying to figure out. All of this means another 2-hour drive to the hospital.

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Fast forward to today. Fast forward to this pandemic. Fast forward to a new set of challenges we are now forced into. Fast forward to now choosing which appointments are a priority. Fast forward to appointments and treatments that are life-saving for Ella and Eve, now being canceled. And not by our choice.

Ella and Eve are still considered chronically ill. They have a long road ahead, and we, as parents, will make sure that they have every opportunity available to them. This is now challenging, given the unfortunate pandemic. Quarantine is nothing new to us. It is familiar ground. Ella and Eve have been quarantined most of their short lives. Chemotherapy and various other treatments have made their immune systems compromised. Our family gatherings and visits with friends have always been limited.

Ella and Eve were granted a Wish Trip to Disney World back in February. This was for their courageous battle against cancer and many other life-threatening medical concerns. While there, we didn’t watch the news often. We were aware there was a virus taking place, but we didn’t know how much it was wreaking havoc on our country.

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When we returned home, Ella and Eve got sick, very sick. I thought, ‘Hasn’t our family been through enough already?’ This was still in early March. Eve was sick for 11 days and Ella was sick for 21 days. Little was known about coronavirus. I called their doctors on many occasions. I was panicking. My stomach was in knots. My heart hurt for them, again. We were told not to go to the hospital because that is the last place you want to bring a child right now. And as far as the doctors knew, coronavirus was not common in children. That has since changed.

We watched our children suffer for three weeks and did our best to make them comfortable. They had these fevers that just wouldn’t break. They had very little energy paired with vomiting and diarrhea. I actually didn’t think it was the coronavirus because vomiting and diarrhea were some of the symptoms. But as time passed, symptoms were being added to the coronavirus. We heard new symptoms being announced daily on the news. The doctors insisted it was a terrible stomach flu as well.

Our daughters pulled through with strength and honor. I am so proud of them for everything they have endured. As news began to spread about the virus, and more was being learned and identified. We realized Ella and Eve may have been fighting this awful life-threatening virus. But, we will never know because antibody testing for children is still unavailable. We will continue to keep them in quarantine, as little is still known about the virus.

Ella and Eve were then due for their tumor checks under anesthesia. We kept thinking Ella and Eve were the priority, they have cancer. Right? They will not cancel this exam, it’s too important. If this cancer returns, it’s extremely aggressive and agonizing. But sure enough, that devastating phone call came. Ella and Eve’s scans were being postponed by two weeks. We thought, ‘OK, we can work through this. This could potentially be saving their lives.’ But just a few days shy of their tumor scans, the appointment was canceled indefinitely. We were told to wait by the phone. Their oncologists would call when it was deemed safe. Days and weeks went by, no phone call. How could Ella and Eve no longer be considered a priority? What is this cancer is attacking them? And this coronavirus was and still is on the rise.

I turned into a crazy mom advocate and needed answers. After waiting for weeks, I made numerous phone calls. I was like a broken record when emailing or speaking with doctors and nurses. Just asking for updates or when Ella and Eve could be seen again. I was so nervous their little bodies were under attack by cancer again, and it was being left to grow. We were finally able to get them in to be examined. What a sigh of relief.

But that relief was short-lived and replaced with unbearable anxiety. We needed to bring the twins to a hospital during a pandemic. And we didn’t know the status of their cancer. We took every necessary precaution. Ella and Eve needed to be swabbed for Covid-19. This is now necessary before any procedure. This is not an easy process for a 2-year-old. And we had to do it twice. They screamed in terror. Luckily, it’s quick, and the nurses were amazing. One step closer to tumor exams. I was probably more taken back by the actual Covid test than the twins. It is painful and uncomfortable for them, but they were given stickers and high fives by the nurses afterward. The nurses were the heroes of the day!!

The day arrived for the exam. We left at 4 a.m. to make the long trek to Philadelphia. I still pump breast milk and freeze it on a daily basis. Specifically, for their many exams under anesthesia. They cannot eat or drink for 12 hours prior to anesthesia. But, they are allowed breast milk 3 hours prior. I don’t know if this is helpful for them, but I like to believe so.

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I also thought of an idea to help keep them safe, keep them protected. It is hard for a 2-year-old to keep on a mask. So now, for every single appointment, we use a plastic rain stroller cover. We place it over their strollers while outside of our home. Remember, Ella and Eve are immunocompromised. They may not be able to fight off this virus.

After a long terrifying wait, the news came in. Ella and Eve’s tumors were stable. We were over the moon with joy, hugs, and tears. The doctors gave us amazing news!!! But then we were reminded to report back in 4 months, as the tumors are still there, but currently ‘stable.’ We were just happy and thrilled Ella and Eve conquered the day. One step forward, in the right direction.

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So, where are we today? I don’t know where to begin, and I certainly do not know where to leave off. We, again, are just weeks away from another horrifying sedated tumor scan in Philadelphia. We are hoping for no delays or cancellations. Ella has just recently started complaining of pain within her eye. So, my mind races: I am worried the cancer has returned. Another anesthesia exam also means more dreaded Covid-19 swabs as well.

Eve’s hearing tests are on hold. We do not know if she needs hearing aids, because we cannot get tested due to this outbreak. Eve also has extremely high blood pressure we are struggling to control. With the pandemic, syringes to administer her medications are now scarce. Ella and Eve will not be entering preschool. They simply cannot. They simply cannot get sick from this virus. Ella and Eve both receive therapy at home. This consists of physical therapy, speech therapy, and hearing therapy. Well, it’s via Zoom while there is a global crisis. This will hopefully fill the void until it is deemed safe to go to preschool. My husband and I are avid mask wearers. We have to be. We have to protect our children and we have to protect others.

When Ella and Eve were diagnosed with cancer, I could no longer return to my career. I have to make sure their plethora of medical needs are met. I have to keep them safe and healthy; that is now my job. My husband works as a lighting and sound engineer in the entertainment field. He was working 7 days a week to make ends meet. Now, his job is no longer, due to Covid-19. My husband’s career will probably be the last to return, as he is around many people in this line of work. His unemployment has been in limbo. The government packages have been false hope. And we honestly do not know how we will manage.

We used to rely on Childhood Cancer Foundations for assistance, and we are forever grateful. But now, they too, are struggling for help. Everything just seems like a bad and never-ending dream. We don’t know if we can make ends meet. We don’t know if there will be a Christmas this year. We would rely on our GoFundME, our family, our friends, and the community. But, this is a worldwide pandemic. With no relief in sight. Throughout all of this, we still need to travel for appointments and exams, endlessly. That causes more worry and concern.

I try to enjoy every moment with our twins, as tomorrow is just not promised. I have no idea how their approaching tumor checks will go. I have no idea how we will handle our finances. What I do know is not to take a moment for granted. I am tired, and I am weary, but I will continue to put a brave face on for our twins. I have short term and long term dreams and wishes for our family. Dreams and wishes are good, right?

I wish this cancer would just go away. I wish for Ella and Eve to no longer endure suffering. I wish this pandemic would calm and the dark clouds would clear. I dream of just taking them on a quiet camping trip or RV, somewhere safe. I dream of being able to provide them everything they will ever need. I wish for no more worry. I dream of them growing older and being able to start families of their own.

They are innocent. They are intelligent. They are full of joy. And they are brave!! I am proud they are mine! I never judge a book by its cover, as you may never know the heavy weight carried within. Be kind. Life is a gift.

If you ever find yourself in a similar situation, just never give up HOPE. Sometimes, that is all you have.”

@OakleyTwinsJourney

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