Retinoblastoma

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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

    Our Twins Have Cancer. Here's Why We Wear A Mask #Cancer

    I have a moment to myself. That's it, a moment.  And I am ok and happy with that.

    Our two year old twin girls, Ella and Eve both have a rare aggressive #Cancer .  They not only share the same DNA, but the same Cancer.   Everyday is an uphill battle. But, they are my heroes. #heroes

    They were both diagnosed with cancer at 1 month old.  They've probably spent more time in the hospital than at home.   They've endured chemotherapy, ostomy bags, seizures, feeding tubes, deadly infections, uncontrollable blood pressures, septic shock, life support, countless examines under anesthesia, and their fight is ongoing.  

    I get it. People think it's a violation of their rights to wear a mask. However, I feel that if I don't wear a mask, its violating the rights of my twins to LIVE. It's violating the rights of others who also wear a mask and want to LIVE.  #live

    See, whenever our twins are at the hospital (even before Pandemic),#dcotors  always gowned up. ALWAYS Head to toe. And, it kept our twins safe. Safe from those tiny microorganisms that could kill them. I know that, because I witnessed it first hand. So if my precious twins' lives were saved by a #mask , then I will proudly wear a mask, for them and everyone else.

    We have been under #quarantine for months. It's nothing new to us. Its familiar ground. They gone through grueling #Chemotherapy , and their blood counts would sit at zero for weeks.  So, we would stay at home.  Now, we keep them at home to protect them from the Corona Virus.  They've been through so much already, I cannot imagine them suffering in a hospital again.  

    Now, the virus has caused their treatments and appointments to be delayed or canceled.  My husband's employment has gone from 7 days a week, to virtually zero.  We are scared to bring them into a community setting.  

    They are strong and they are brave.  I am proud that they are mine. @OakleyTwinsJourney
    #Retinoblastoma #ChildhoodCancers #twins #Anxiety #Depression  #wearamask #RareDisease #sisters #Health #MedicallyFragile #Toddlermom #Deafness #cancerresearch #Awareness  #Safety

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    Selma Sulejman

    Living With Retinoblastoma and Side Effects of Treatment

    As the saying goes, “Life is a box filled with chocolates, you never know what you are going to get.” Life is unpredictable, just like pediatric cancer , the number 1 disease killer in kids. It can strike at any given time on any race, gender, socio-economic demographics, religion, and so on. At only 3 months old, my family and I were faced with the cold and intimidating world of childhood cancer. After several days of simultaneous fevers and an odd glow in my right eye, my mother rushed me to the nearest emergency room. It was there that diagnostic tests were conducted and an ultrasound confirmed the diagnosis of retinoblastoma. I immediately had to undergo an emergency enucleation of the right eye to ensure my survival. Post-surgery, my loved ones were forced to reckon with the news that the cancer had spread to my left eye, and that now this had become bilateral retinoblastoma. With the outstanding care of Memorial Sloan Kettering Cancer Center, I did two full years of radiation and cryotherapy to get rid of the cancer in my left eye. When I turned 3, I was able to deem myself cancer-free, and done with the toxic treatments that were sure to leave me with long-term side-effects as a survivor. The years that followed, consisted of close monitoring of my eyes and brain, where treatment was induced with MRI scans , lab tests, and ultrasounds . At the age of 7 I lost sight in both eyes, all due to the toxicity used to kill the cancer. So here I was, first an infant unaware of what’s being done to my body and brain while battling pediatric cancer, and then growing into my early childhood years and learning to live with the reality that I will never be able to see my face again, the sun rise and set, my family’s appearances, and so much more in the physical world. Of course, like anything else, this was a time of adjustment and adaptation, to living a life as a completely blind individual. It was not smooth sailing at first, but all journeys in life have those small pebbles that one must crawl over, then you eventually make that Olympic jump over the larger rocks. This is just what I did. I went through grade school and high school for persons who are blind and visually impaired, and then made my way to undergraduate studies at John Jay College of Criminal Justice. In between high school and my college career, I was diagnosed with a list of long-term effects, such as ACTH deficiency, induced radiation migraines, hyperthyroidism, increased heart rate, and the continuation of being screened for secondary cancers. I was also recently diagnosed with equal to mild hearing loss due to the radiation. As pediatric cancer has significantly shaped who I’ve become as a person, when entering college, I always knew I wanted to go into a field of study that would allow me to help others not only in a regionally, but on a more universal spectrum. I am driven by justice, humanitarianism, advocacy, and effective change, all of which brought me into the field of criminal justice, the sciences, and literature. Currently, as I complete my legal academic endeavors in post undergraduate studies, I have found ways to utilize my skills and passion within the subcultures of law, health, and social justice. Not only am I a fierce advocate for children fighting this beast of pediatric cancer, but I also find this awareness grounds for disability rights, women’s rights and human rights — all on an international level. If there are a few things I have been taught early on in life (thanks to my fight with pediatric cancer), it is that life is imperfect, but these ups and downs have solidly paved my rode to success, happiness, and love. You never judge a person until you can find yourself walking in their shoes. You just don’t know if you could walk with your eyes closed and do what they do on a daily basis, or communicate with a voice synthesizer, or function with a hearing aid because they have severe hearing loss, and much more. Most importantly, no idea or question is ever stupid or silly, because we all have a right to our personal feelings and considerations. The battle is indescribable. It’s hard for parents and family members because they are not running the marathon or fighting the same battle that their family member is. Children battling cancer should never give up hope and never feel that they are alone. So many are willing are to help and listen, if needed. In some situations, there is a sad outcome even if you survive the disease. Cancer can leave you with a disability like me (blind in both eyes), and you can have post toxic treatment side effects. For parents, the most important thing is to give their child hope and that they can still accomplish their dreams. That a cancer diagnosis can’t take everything away from them, and to always have hope. Although many milestones have been taken away from me, as a child and as an adult, I only wish to work tirelessly with my best foot forward in making more milestones possible for the kids who are faced with cancer in society. “Be a voice for the voiceless!” We want to hear your story. Become a Mighty contributor here .

    Mom’s Photos of Baby With Down Syndrome May Have Saved His Life

    A mother’s photos of her 4-month-old son with Down syndrome may have saved his life. Like any new mom would, Andrea Temarantz, 36, took lots of photos of her son Ryder Temarantz when he was born. But this past December she noticed the camera flashes produced a “white glow” in Ryder’s left eye in many of the photos. At first Temarantz chalked it up to a bad camera, but even after she switched to a nicer model, the effect persisted. At a checkup at the doctor in January, Temarantz, still not thinking much of it, mentioned the “white glow.” Within 24 hours, Ryder was diagnosed with retinoblastoma in his left eye. A white tumor mass in the back of Ryder’s eye was reflecting light from camera flashes. Ryder is now getting treatment at Memorial Sloan Kettering Cancer Center in New York City. The tumor has not spread to other critical organs of his body, Dr. David H. Abramson, chief of the Ophthalmic Oncology Service at Memorial Sloan Kettering, told ABC News. “It’s one of those cancers that can be fatal if not detected early,” Abramson told the outlet, “so it’s great his mom noticed it early and got it checked out.” According to the National Down Syndrome Society, there is an “increasing concern” that retinoblastoma may be diagnosed more frequently among people with Down syndrome. Ryder will be undergoing three to six rounds of ophthalmic artery chemosurgery, but his odds of recovering from the cancer and still having some vision in his left eye are 99 percent. Get more on the story from the video below: Keep up with Ryder’s journey, or donate to his treatment by going here.

    Rapper Fetty Wap Gave Boy Missing an Eye Something His Parents Couldn't

    A rapper’s unapologetic individualism taught one young boy a valuable lesson. Brenda Vader, from Denver, has a son named Jayden who was diagnosed with retinoblastoma when he was only a year old, according to a post on her Facebook page. Retinoblastoma is a rare cancer of the thin membrane on the inside back of the eye that is stimulated by light, according to St. Jude Children’s Research Hospital. Jayden’s cancer treatments ended up costing him his eye, and he’s worn a prosthetic ever since — that is, until rapper Fetty Wap came onto the scene. Willie Maxwell II, better known as “Fetty Wap,” hit it big this summer with his song “Trap Queen.” Maxwell was diagnosed with glaucoma when he was 6 months old, which resulted in him losing his left eye, he told TMZ. But the rapper now refuses to wear a device to hide his missing eye. “I just stopped wearing the prosthesis because I didn’t want to look like everybody else,” Maxwell told TMZ. Jayden, a fan of Fetty Wap, recently made the same decision — he decided to stop wearing his prothesis. His mother posted about Jayden’s decision on her Facebook page.   (Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap….Posted by Brenda Vaden on Thursday, September 10, 2015   Read the full text of Vader’s post below: (Warning: long sentimental post ahead) Today I am forever thankful to a young man named Willie Maxwell aka Fetty Wap. While his music is catchy (not always agree with his lyrics but hey who am I to judge…), I'm not necessarily his fan (although Trap Queen is my jam), BUT today I'm his biggest fan.Many close friends, and of course our family know that Jayden was diagnosed with Retinoblastoma at the age of 1. In result of that he had his right eye removed 2 weeks after his 1st bday. He's worn a prosthetic eye since then. He has always been terrified of taking it out and would not be caught without it…and then comes along Fetty Wap…Similar to Jayden he lost an eye at a young age and along the way he decided that he didn't want to wear his prosthetic eye anymore, so he stopped. Jayden, let it be known, is a Fetty Wap fan, a real fan, not like me ha! Well, today, after weeks of asking, Jayden is venturing the world without his prosthetic. I of course am a wreck because this world can be cruel, but so proud of our Boogies. This young rapper unknowingly gave Jayden something we weren't able to give him — the confidence to be different — and I am grateful to him. Thanks to Fetty Wap for saying F the world this is me, and for helping make our baby boy just a little more remarkable than he already is. And we'll be purchasing his album, a small thank you to him for changing Jayden's life forever. Since Brenda Vader posted the above on Facebook and Instagram, she’s received an outpouring of support. Check out the video for Fetty Wap’s song “Trap Queen” below: h/t BuzzFeed

    Boy Diagnosed With Retinoblastoma With Help of Photo

    Lots of moms take photos of their children, but not every photo saves a life. After noticing what appeared to be something at the back of her 2-year-old son’s left eye, Julie Fitzgerald, from Rockford, Illinois, did some research online, WREX reported. She read that if it was a tumor, there was a chance it could be detected using the flash from a camera. Fitzgerald then took the photo below of her son, Avery. The white glare over his pupil confirmed her fear and convinced her to take Avery to a doctor. Avery was diagnosed with retinoblastoma, a form of eye cancer, and 75 percent of his eye was covered in tumors. “I didn’t want to take the picture because I had this dreaded feeling in the pit of my stomach,” Julie Fitzgerald told the outlet. “I took the picture and boom. His whole pupil was just white, and that’s when I knew.” The eye had to be removed, but doctors said if it hadn’t been detected when it was, it could’ve spread to his brain or his blood. Watch the video below for more on Avery Fitzgerald’s story: Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    This 4-Year-Old Cancer-Fighter Has an Adorable Announcement for Her Best Friend

    Violet, 4, and Juniper, 3, became best friends while undergoing treatment for retinoblastoma at Seattle Children’s Hospital, CNN reported. Retinoblastoma is a rare cancer of the retina, according to St. Jude Children’s Research Hospital. When approached by The Make-A-Wish Foundation, both girls chose to visit Disneyland. Violet’s trip was in December 2013. When Juniper got her wish the following October, the organization offered Violet the chance to share the good news with her friend. In the video below, Violet, dressed as a princess, excitedly breaks the news to Juniper. “Juni, you’re going to Disneyland,” she exclaims. “That’s the best place on Earth, Juni!” In just a week, the sweet video has received nearly 300,000 views. “[Juniper] was super excited to see Violet and she knows what Disneyland is, so she got really excited,” Danielle Ouellette, Juniper’s mother, told CNN. Both girls loved their time at Disneyland and are currently in remission. h/t Reddit Uplifting News Want to celebrate the human spirit? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .