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    Maryann Oakley

    The COVID-19 Pandemic Has Impacted Treatment for My Twins With Cancer

    “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. 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. At about 10 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. 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 six months in the hospital, two 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 two 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 inpatient care, at about one 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. 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 five. Ella and Eve are now two. 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 through, 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. It helped them. It provided relief. 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 two 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 two hour drive to the hospital. 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 were 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 three hours prior. I don’t know if this is helpful for them, but I like to believe so. 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 four 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. 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 seven 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.

    Community Voices

    I almost died giving birth to my son, and it saved my life

    I almost died giving birth to my son and it saved my life. The triggers of PTSD (PostTraumaticStressDisorder) are live changing. I’ve been told that my responses to triggers are ‘just anxiety‘ or ‘hypochondria.’ However, when you’ve had multiple life-threatening conditions ignored by medical professionals and friends/family alike you become conditioned to the flight or fight response that is so deeply rooted in the aftermath of traumatic life experiences. I had several odd health experiences that seemingly started in high school after my recovery from mononucleosis. I experienced overwhelming fatigue, widespread body pain, neurological symptoms like dizziness and faintness, and heart palpitations. I mostly learned to live with these symptoms after multiple trips to urgent care, my primary care physician and even the emergency room turned up with no answers. I settled on the idea that nothing could be done, despite my gut knowing that something wasn’t right. In my mid-twenties a CBC turned up low globulin levels in my blood that sent me into a whirlwind of testing- the result, idiopathic hypogammaglobulinemia– an immune deficiency of unknown origin. At the same time, I was having gastrointestinal issues, vomiting after meals, early satiety and was diagnosed with gastroparesis after a gastric emptying study. I was told that these conditions were unrelated. So, I went about my life adding two more layers of complexity to my medical mystery. Entering my early thirties, I decided that I would like to try for a child. With my diagnoses and my suspicion of other underlying health issues, I went to see all of my related specialists, PCP, Immunologist, Rheumatologist, Gastroenterologist to consult whether it would be safe for me to have a child- the overwhelming response was YES! I became pregnant and I felt better than I’d ever felt, until 33 weeks gestation- I began swelling with pitted edema and my blood pressure became erratic. I was told that home blood pressure cuffs ‘aren’t accurate’ and dismissed. After an especially high blood pressure reading I went to triage at the local hospital where I was scheduled to give birth. My blood pressure read high and I had protein in my urine, but I was sent home with little to no concern or recommended plans for follow-up. Right quadrant abdominal pain woke me up in the middle of the night the next day and I called the on-call OB GYN to report what I was feeling, she told me ‘Oh, it’s about to rain tomorrow, you pregnant women are like little walking barometers, it’s nothing to worry about- today isn’t your time.’ I trusted the advice, I made a pact to myself that I would wholly trust the medical professionals and my body through the process and so I did. Within the next 12 hours I was in the hospital, this time with debilitating right quadrant pain and now my blood pressure was highly elevated, the platelets were low and elevated liver enzymes- I had full blown HELLP syndrome, a rare and potentially life-threatening pregnancy complication. I was induced and told best practice for this situation was a vaginal delivery. My condition worsened and after 24 hours of labor and significant decline in my condition, my son was delivered by c-section at 35 weeks to the day. He was a small 4lbs 14oz but I was told that he was otherwise healthy- phew- I did my job- and I was whisked away to the ICU. When I finally regained consciousness, they brought me my son, he was perfect. I help him with the help of family and medical staff and I feel completely in love and I knew immediately I would do anything for my child. We started feeding my son and he vomited blood and almost immediately green bile. The nurse told me that the vomiting was ‘just birthing fluids.’ This time, I didn’t trust the medical staff, I didn’t buy this story so I insisted he be returned to the nursery for examination. The medical director returned a few hours later reporting that my son was not well and that his condition was declining rapidly, they were unsure what was wrong. I urged them to get prompt care at the highest level and to transfer him to another facility if that was necessary. He was transferred and went through 3-days of back-to back surgeries, he had suffered a volvulus as a result of intestinal malrotation- he lost 85% of his small intestine and was left with the diagnosis of short bowel syndrome and given an ostomy, g-tube, broviac catheter and total parenteral nutrition. We weren’t made any promises. We stayed 3.5 months in the NICU until our experience there proved that we needed a more specialized team- we transferred our son to a hospital that specialized in this population. We rehabilitated his bowels for almost 7.5 months before we were discharged home with a tube and total parenteral nutrition. I became my son’s nurse (as we were not offered any medical care), mother and fierce advocate. I made it my mission to give my son the best possible outcome despite his diagnosis and established excellent therapists, fine tuned his medical management, read journal articles and networked with others in the nutritional support community to learn best practices. During this time, my health took a downturn, I began dramatically losing weight, passing out, vomiting regularly and became weak and feeble – all while putting everything I had into my son’s wellbeing. Throughout my advocacy- I encountered individuals with many different diagnoses that resulted in situations similar to my son’s (ostomy, broviac, TPN, G-tubes) and a light-bulb went off. WAIT – I recognized many of their symptoms beyond my son’s – these were MY symptoms. My son’s rare and complex condition led to the resolution of my years of mystery ailments. I learned about connective tissue disease (EDS, Lupus, Sjogrens) and how these disorders could lead to my symptoms and pregnancy complications. I also learned that autoimmune disorders can be the result of immune deficiency (my hypogammaglobulinemia was something to be concerned about after-all), My widespread itching and hives were a product of mast cell reaction disorder and the list goes on. I consulted a geneticist and FINALLY got answers to so many unanswered questions that I’d archived over the years and the treatment my body desperately needed. My son is now off of TPN and his SBS is stable, I’m not cured, my conditions are chronic but my care is being managed- neither my son nor I are ‘cured,’ but together, we made it- I saved him and he saved me. Now we navigate a life together of RareDisease management and I continue to invest my time in advocacy for the chronic and RareDisease community. I am grateful for where my son and I are today in our health journeys, although far from perfect. The most unfortunate piece of all of this jigsaw puzzle is the misguided paths and resulting misfortune of significant delays in diagnosis and care- is that in addition to all of the diseases and disorders that my son and I are up against, I have added PTSD (PostTraumaticStressDisorder) to the top of my list- the figurative here on top of all of this. So, today I manage active ChronicIllness and try my best to cope with the misfortunes of my past. Regardless of how positive I am in my life, the relentless wake of PTSD settles upon me and asks me to relive my responses to some of my life’s most difficult and heart-wrenching moments. June is PTSD awareness month, my hope is that more research, counseling and support are available through the transparency of this disorder.

    #PTSD #ChronicIllness #RareDisease #PostTraumaticStressDisorder

    5 people are talking about this
    Community Voices

    The crohns princess

    As a kid I was abused by my mother, I thought it was the worst thing that could happen, but it wasn’t..

    We moved when I was 13, and everyone at school almost disliked me for being short,

    I used to be so lonely I’d listen to a radio in the breaks, and avoid everyone, because they’d just tease me.

    I’d draw and escape into books, and my mom was abusive and telling me I was never good enough, pretty enough, tall enough or popular enough, and I was a burden to her.

    For a year since I was 12, I threw up after dinner, my mom didn’t do anything until a year passed, and I thought it was a part of growing up, but when my dad expected a eating disorder they moved fast, but it wasn’t the problem, it was a lot of days at the hospital and tests and I got crohns disease after they first suspected other things, not just crohns disease, but it was so serious a doctor once told me I’ll always be ill, and if Im better, I just have to wait for the medicine to stop working and get ill again.. Thanks I guess..?

    You’d think my parents would support me more then right? Hahaha, no..

    I could NEVER complain, if I did I was lazy or tried to sneak out of duties, I was lying or just acting out they thought, and I was forced to go to school and raise my brother, I had to get him to kindergarten and back and wake up a hour earlier and pick him up after, while being really ill, and my mom blamed me for having to come with me to the hospital, I remember being envious on the kids with caring and sweet parents, my mom had full custody and always followed me till I was 18, but she mostly just left me at the hospital during medicine claiming she was buying me some food and was gone for hours.

    At 17 they wanted to do a surgery and remove some of my colon, because I was in a good period, I woke up after the first surgery and felt ok, everything was ok and I could go home very soon, once we prepared to go home, I got ill, so ill i can’t even remember anything from it, but I was told I was rushed into surgery and they found out my colon wasn’t connected, it had swollen up, it could have killed me, and my dad was terrified, my mom was cold and calm ofcourse.. And the surgery went fine but I woke up with a stoma, I had no idea what it was, or what I’d do with it, and it was all terrifying.. I’m not sure if it was after the first or second surgery, but I had a epidural and was fresh out of surgery, and all night I laid there in pain because the epidural fell out.. They didn’t notice that ofcourse because the medicine was going in..It was the worst thing ever, and to this day hospitals give me uncontrollable panic attacks.. After that they sent me to a surveillance place where I got alot of pain killers, it felt like being in heaven is all I remember. I think I was in the hospital for 3 weeks to heal, but im not sure, it’s 10 years or so ago, but it still makes me horrified of hospitals and needles..

    2 months after that I had a #Volvulus, the skin grew into the colon and blocked it, I was sent about 1 hour in a ambulance because I visited my granny and later got surgery again, and removed the stoma, and I was so relieved, as it was hell for me..

    Now I’ve tried all the medicines they have and have nothing to fall back on, it’s terrifying, but I found something to work luckily, so I have to hope more alternatives will come, and I’m happy for every good day, but its still hard, and my family rarely supports me or seem to care, they only visit if I’m at the hospital, and then they often act like I’ll die, or freaks out, or they just don’t seem to care and offers to visit more because they have to, depending on who it is, only 3 in my family visits though, my mom, dad and granny, no one else, I don’t blame my siblings, they’re alot younger than me, and I don’t want them to see me sick, but it’s sad that my other family doesn’t seem to care at all, I don’t think they even know how sick i am, as if it’s a secret..

    But I don’t want to tell them that, it’s not my place to do when Ive been sick for half my life..

    To this day, my family doesn’t really belive my mom abused me either, sometimes I even doubt myself, because I’m told I’m lying or making things up.. And she treats my brother so much better, and hugs him and tells him she loves him, why didn’t I get that? My family failed me, and they’ve never even apologized or tried to understand.. I don’t need a apology from my mom, she’s to sick to realize it..

    I always feel strong until I realize how little support I have, it’s been so bad the best support i have is myself, and it probably saved me, because I never let myself give up, and I always cheer myself on. Videogames, books and hobbies are my savior, and I am so happy that I can be home and do what I love all day, and even if people don’t get it, i’m happy!

    I’ve been through hell and know I can take it, but I’ll cherish all the good times and always fight on, because it always gets better, don’t ever give up!

    Thank you so much for reading my story❣️

    XOXO Cookie Lexie

    #CrohnsDisease

    13 people are talking about this
    Community Voices

    As a kid I was abused by my mother, I thought it was the worst thing that could happen, but it wasn't..
    We moved when I was 13, and everyone at school almost disliked me for being short,
    I used to be so lonely I'd listen to a radio in the breaks, and avoid everyone, because they'd just tease me.
    I'd draw and escape into books, and my mom was abusive and telling me I was never good enough, pretty enough, tall enough or popular enough, and I was a burden to her.
    For a year since I was 12, I threw up after dinner, my mom didn't do anything until a year passed, and I thought it was a part of growing up, but when my dad expected a eating disorder they moved fast, but it wasn't the problem, it was a lot of days at the hospital and tests and I got crohns disease after they first suspected other things, not just crohns disease, but it was so serious a doctor once told me I'll always be ill, and if Im better, I just have to wait for the medicine to stop working and get ill again.. Thanks?

    You'd think my parents would support me more then right? Hahaha, no..
    I could NEVER complain, if I did I was lazy or tried to sneak out of duties, I was lying or just acting out they thought, and I was forced to go to school and raise my brother, I had to get him to kindergarten and back and wake up a hour earlier and pick him up after, while being really ill, and my mom blamed me for having to come with me to the hospital, I remember being envious on the kids with caring and sweet parents, my mom had full custody..

    At 17 they wanted to do a surgery and remove some of my colon, because I was in a good period, I woke up after the first surgery and felt ok, everything was ok and I could go home very soon, once we prepared to go home, I got ill, so ill i can't even remember anything from it, but I was told I was rushed into surgery and they found out my colon wasn't connected, it had swollen up, it could have killed me, and my dad was terrified, my mom was cold and calm ofcourse.. And the surgery went fine but I woke up with a stoma, I had no idea what it was, or what I'd do with it, and it was all terrifying.. I'm not sure if it was after the first or second surgery, but I had a epidural and was fresh out of surgery, and all night I laid there in pain because the epidural fell out.. They didn't notice that ofcourse because the medicine was going in.. It was the worst thing ever, and to this day hospitals give me uncontrollable panic attacks..

    2 months after that I had a volvulus, the skin grew into the colon and blocked it, I was sent about 1 hour in a ambulance because I visited my granny and later got surgery again, and removed the stoma, and I was so relieved, as it was hell for me..

    Now I've tried all the medicines they have and have nothing to fall back on, it's terrifying, but I found something to work luckily, so I have to hope more alternatives will come, and I'm happy for every good day, but its still hard, and my family rarely supports me or seem to care

    8 people are talking about this