Childhood Cancer

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Childhood Cancer
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    13 Successful and Famous People With Down Syndrome

    Do you know anyone who has: interviewed over 600 people for a Happiness Film Project that has over 3 million views had an official superhero drawn and named after them spoken to the UN or to Congress spoken to Parliament in London acted on an Emmy winning TV show won a broadcasting Emmy earned The Diana Award (named after Princess Diana — the highest accolade a young adult can earn for their humanitarian work) become an international and print model in NYC/ Paris/ Dubai and more made an award-winning short film acted in a George Takei play (Sulu from Star Trek) had their poetry praised by Pete Townshend of The Who been in People Magazine three times entered a Miss USA pageant written a children’s book officially counted over 75,000 hugs started a successful business and/or non-profit and/or become a globally known self-advocate — all while in their 20s or 30s? What would you say if I told you all of these amazing young adults have Down syndrome? As the mom of a young adult who has Down syndrome and autism, I say, “Yes! It’s about time!” People with disabilities, their families, educational professionals, employers, and society as a whole need this fresh breath of air that truly represents massive change. That is the only way we, as a cohesive unit of humanity, can move forward into this century and beyond. Every March is Developmental Disabilities Awareness Month. Because my Born Fabulous Podcast celebrates accomplished young adults with intellectual disabilities, I started sharing special features of successful young adults I know with Down syndrome on social media. What started out as a simple thing to do quickly became more involved. As I reached out to self-advocates and their support teams for more information and photos for my write-ups, I received extensive resumes and CVs. Each person had done so much already in their young lives that it was hard to highlight all their achievements. I received so many photos that it was hard to choose what to use, so I started making collages. And then I noticed these themes emerging. It became clear that massive positive change is taking place in the beauty industry, media including film/TV/social media, business, non-profits, advocacy/politics, sports, and more. Seven sought-after public/keynote speakers, four professional models, three filmmakers, four actors, two corporate CEOs, three non-profit CEOs, three artists, one professional lobbyist, and so many more amazing people emerged. A Happiness Expert (1) and a Hugging Expert (9) are in this exciting and eclectic group. Every single young adult is a strong self-advocate making a tremendous difference, felt not in ripples, but in waves. And these waves are no longer just local, they are global. 1. Fionn Angus, 26, Galway, Ireland. Non-profit CEO, musician (fiddle), visual artist, filmmaker, international public speaker, stand-up comedian, global self-advocate. Fionn has spoken to over 35 colleges and universities in England, Holland, Denmark, Australia, the USA, and Canada. He has helped educate over 10,000 students in Ireland about wildlife. 2. Nino Genua, 23, Bristol, England. Professional model, athlete, rugby coach, soccer coach, global self-advocate. Nino works 5 jobs, networks with other globally known self-advocates championing legal change to help people with disabilities, and is a strong believer in physical fitness after serious illnesses and injuries when he was younger. 3. Olivia DePiore, 25, Cleveland, Ohio. International runway/print model who has been in Fashion Weeks from NYC to Paris and Dubai, actress, advocate, superhero character Prima Diva by FutureGen Comics created in her likeness, childhood cancer survivor who has raised over $100,000 for the American Cancer Society. 4. Heidi Crowter, 26, England. Married, global self-advocate who has started and spearheaded changing laws to help people with disabilities in England and beyond. When Heidi hears no from legislators, she appeals! 5. Rachel Handlin, 26, USA. Photographer, award-winning filmmaker, visual artist, strong inclusion self-advocate, first person with Down syndrome to earn a bachelor’s degree at California Institute for the Arts and now earning an MFA at Pratt Institute. 6. Connor Long, 27, Louisville, Colorado. Film and stage actor, international public speaker, athlete, Broadcast Emmy Award-winning former reporter, filmmaker, self-advocate. 7. Mikayla Holmgren, 27, Minnesota. Professional model, dancer, first woman with Down syndrome to compete in a Miss USA pageant in Minnesota, public speaker (has spoken before the United Nations and the U.S. Congress). 8. Sean McElwee, 28, Mission Viejo, CA. Emmy Award-winning “Born This Way” cast member, CEO of Seanese t-shirts, creator/host/star of The Sean Show on YouTube, public speaker, strong self-advocate. 9. Tim Harris, 36, Albuquerque, NM. First person with Down syndrome to own a restaurant, CEO of Tim’s Big Heart Enterprises, very popular public speaker, author of “The Book of Hugs,” has officially counted 75,000 hugs. 10. Kayla McKeon, 34, Syracuse, NY. First professional lobbyist in DC with Down syndrome, podcast host of “Kayla’s Korner,” sought-after keynote speaker, community college student. 11. Stephen Todd, 31, Virginia Beach, VA. CEO of non-profit Bluebird Beach Bungalows. Stephen has raised over $80,000 for over 60 charities building $15 birdhouses out of reclaimed wood and sea treasure decorations. Stephen’s motto is “Do good things!” 12. Brandon Gruber, 26, California. Non-profit CEO, artist, used his art to sell cards to help people in disadvantaged groups – earned The Diana Award, model, fashion designer, actor who is currently in the George Takei play “Allegiance,” very strong self-advocate and leader, has been in “People Magazine” 3 times. 13. Melissa Riggio, New Jersey. Writer famous for “Know Me Before You Judge Me” in National Geographic Kids, poet whose poems were turned into songs by Pete Townshend’s wife Rachel Fuller, swimmer, strong self-advocate. Melissa’s father was former Barnes & Noble CEO Steve Riggio, and her birth made thousands of titles about disabilities available to the public in a time before Amazon. Melissa encouraged awareness events at Barnes & Noble stores all over the country, progress in continuing education after high school, and more progressive living choices in adulthood. Melissa passed away in 2008 at age 20, but will forever be part of disability history. She is currently listed in South Korean textbooks. This is just the tip of a massive sea of progress, not just for people with Down syndrome, but for all people with disabilities. I follow many strong, successful, and exciting self-advocates who are autistic, blind, have hearing loss, cerebral palsy, and many more disabilities. Progress for one is progress for all.

    Megan Liang

    Seeking Therapy as an Asian-American Childhood Cancer Survivor

    A few months ago, I hung up the phone and sighed in defeat for what felt like the hundredth time. Since the end of 2020, I have been on the search for a therapist for the first time in my life. At this point, I had repeated and memorized the summary of the past 26 years of my life: “I was diagnosed with osteosarcoma at the age of 5, and they later had to amputate my leg at the age of 6. I know I have struggled with anxiety, and I am pretty sure that my childhood history with cancer has caused me some form of PTSD. I would also like to work with someone who also has a cultural understanding of growing up as an Asian-American. So… do you think that we can work together?” You might be wondering: why was I just starting to look for help? The answer is easy: I didn’t think I needed it. Growing up, I thought I was pretty lucky: I beat cancer, I only lost one leg (and am still pretty mobile with my prosthetic leg), and I am now in good physical health. I could feel my privilege of being alive and beating cancer when I saw so many friends and family like me go through cancer recurrence or even lose their battle against cancer. As a childhood cancer survivor and amputee, I have always felt pretty self-conscious of my medical history and my visible disability. The conversations with strangers always go the same way: “How did you lose your leg?”“Cancer?! At that age? You poor thing!”“I’m so sorry for your loss.” While most people mean well, I have learned that there is a very clear difference between sympathy and empathy. Honestly, it just makes me laugh sometimes. “I’m sorry for your loss?” I mean, my residual left limb thanks you for expressing your deep compassion for its lost other half; otherwise, please save that for someone else. As you can probably tell, I tend to resort to humor or sarcasm as a coping mechanism. It’s funny and a bit sad when you think about it; whenever I feel uncomfortable about people staring at my leg or feeling sorry for me, I will make a joke or just internalize it to make sure that they were comfortable and didn’t feel awkward, disregarding how it may have made me feel. I’ll be frank: I am 100% aware of when people are looking at me and my leg, and I am uncomfortable 100% of the time they are looking at me. I can see when adults pull their children away from me, thinking that it’s rude to ask (it’s not at all; I am happy to answer all of your kids’ questions so we can normalize disabilities in conversations). I cringe every time someone does a double-take at my leg. It’s been 20 years since I became an amputee, and it hasn’t gotten easier, but I’ve learned to do a pretty good job at hiding my reactions. It took me a very long time to even realize that I was allowed to seek help. Mental health isn’t a common topic in Asian households. Our family certainly cared for each other’s health and wellbeing, but the topic of mental health and how we were feeling never really came up. After my diagnosis and amputation, “how are you feeling” meant “how are you doing physically?” If something was bothering me mentally, I didn’t know how to process it, because I didn’t even know what it was and what it meant. I eventually learned to shrug it off and internalize my feelings, as it felt like it wasn’t a big deal and I needed to be grateful for even having the option of feeling any sort of way. When I was growing up, I learned that my name in Chinese roughly translated to “Sunshine.” I remember my parents telling me what it meant, and proudly saying how fitting it was, considering I was always so positive and upbeat despite everything that I had been through. I always had mixed feelings about my Chinese name growing up. I have had people make fun of the pronunciation when I would finally share it; I have had people make fun of my middle name when they saw it on official school documents (my middle name is actually the pronunciation of my Chinese “first name”). When I heard that my name meant something so positive and so warm, I found a new pride in it; however, with that pride, I took the translation almost too seriously. I was already a generally positive person and already wanted to ensure that my peers were not uncomfortable with my visible disability. Now, I felt some sort of obligation to live up to my given name and continue to spread positivity, even if I wasn’t feeling it. There were a lot of external pressures outside of my family environment that made it difficult to seek help. The expectations and pre-established beliefs created by the Model Minority Myth made me feel as if I was held to a higher standard than my non-Asian peers. These dangerous stereotypes portray Asian-Americans as “model minorities” — highly intelligent in academic settings and successful in their careers. Growing up, academically, I didn’t fit the “model minority” stereotype; I was just average at all subjects. In addition, I didn’t even meet others’ standards physically; I was missing one leg and could barely participate in sports that required walking or running. Addressing my mental health issues on top of my misfit into societal standards just made me feel even more weak; Megan “Sunshine” Liang it is. It has taken me practically 20 years to realize that it’s OK to not be OK, even despite how much you’ve braved and overcome. It took immersing myself into a community of amputees to learn that my experiences and feelings were valid and not unique to myself. It took reading stories from other Asian-Americans who also did not fit in the mold to realize that I didn’t have to fit any societal standards that others tried to put on me. Now, I always talk about the importance of community to the point that I sound like a broken record. Having a community can do wonders for validating not only the experiences that you may find unique to your disability, but the feelings you might have internalized or even vocalized about existing as a person with a disability. It felt even sweeter when I joined Asian-Americans with Disabilities Initiative, or AADI, this summer. Being a part of this community that understands your entire experience and feelings of having multiple marginalized identities is so important. My search for the right therapist continues, but I oddly feel more at peace with myself than ever. It’s OK to not be OK, and it’s OK for you to take time to realize that. In the meantime, I’m going to work on finding a more authentic definition of “Sunshine” and try to embrace it as I move forward.

    Finding Joy, Hope and Strength on Our Family's Make-a-Wish Vacation

    On February 18, 2017 we packed up a rented minivan and took off on a 10-day, epic family adventure. Thanks to the Make-a-Wish organization, we were off to California to visit Disneyland, Legoland and most importantly to show Dax the ocean. He loves water with a sweet passion and he had always wanted to see big, blue waves. As I prepared for this trip, the Led Zepplin song “Going to California” played in my head for weeks. Partly because I just watched Brandi Carlile cover the song at a pretty amazing party, but mostly because of this lyric: “Going to California with an aching in my heart.” It took me some time to get excited about this trip for two reasons. First, it meant that we had to accept hel…(ahem)…hel…(I can do this) help. That hasn’t always been easy for us. We do the helping. We do the giving. Receiving help was a role that was very uncomfortable for us at the time. We promptly made a priority to add Make-a-Wish Montana to our charitable giving list when we were through that challenging time. But the main reason for my trepidation was that Make-a-Wish experiences are reserved for kids with life-threatening illnesses. Accepting the trip meant accepting that our little man is seriously ill and that’s just…too much. So I did what I always do when I feel overwhelmed…I tried to learn more. I read about the impact and proven health benefits of wishes granted and how families find strength, hope, and joy through this experience. I spent hours reading stories of Wish kids with giant smiles on their faces, consumed by the moment they are living in. Consumed by the moment. It’s so easy to be consumed by the logistics of life, that we forget to live. We forget to be present, to live fully right now. This trip was about just that…finding strength, hope and joy in those moments. The memories of the days we spent at the beach and Disneyland held considerable power from which we drew to get through six months in the hospital. We talked every day about meeting Mickey, Donald and Goofy. We shared stories of our favorite rides and stinky horses. The memories of those Wish days changed the way I viewed the true impact of Make-a-Wish. The aching in my heart was replaced with tremendous joy, hope and strength. This was four years ago and we each still share stories of this Wish come true. We still find strength, hope and joy in those memories. And while our son is currently healthy and thriving, we know more challenge will come. Because of Make-a-Wish and this experience, I know we can handle those challenges, too. “Standing on a hill in my mountain of dreams, Telling myself it’s not as hard, hard, hard as it seems.”

    Nori Garcia

    You Don't Know the Pain My Body Has Endured With Chronic Illness

    Today, I got told by someone, “I wish I had your body.” So many thoughts came rushing to me, yet I had no words. So, it stayed with me, everything I should have said. Often we compare ourselves to others without knowing the whole truth. See, my body, a body that has undergone 13 surgeries due to bone cancer since the age of 12 to now 36. My body, the one with a total femur replacement and 16-inch scars on each side of my thigh. This body that is chronically ill and tired with lymphedema due to all those surgeries and years spent stuck in a bed till it could learn to walk again. This body that has to wear compression 24/7 to make sure it doesn’t swell. This body I have to move, yet rest at the same time so I don’t totally crash and burn and have to spend days in bed. This body that has to wear heels all the time, and yes, I look very stylish and hot, but it’s been a product of losing range of motion, so walking in flats is nearly impossible. So, others assume I’m just high maintenance and vain. This body that, at moments, is ridden with the worst of pains. Would you still want my body after knowing all this? Why do I share this, you may ask. I’ve had to learn to love the same body that feels like it’s constantly betraying me. I’ve had to come to terms with it and learn to worship it and be grateful because it got me here. This body that carries this mind and soul that keeps pushing me to dream and never allows myself to get to such a broken place that I cannot pull myself out of it. This body knows love and has experienced some of the most beautiful moments one could dream of. Next time you think you wish you had someone else’s body and you hate on your own, remember we never know what someone has truly lived or what they cover up because it’s the only armor they know. Take a moment to appreciate that body of yours. For it’s carried you to this moment. Because with all its flaws, it’s also so beautiful and incredible. Truly a work of art. After all, we are all perfectly imperfect. Bask in the glory of that.

    Shelby Brimley

    What Christmas Time Means When Your Baby Has Cancer

    “Hello, baby,” I said, tears streaming down my face as I readjusted his tiny body. The OBGYN had just caught our newborn boy and placed him on my chest. I soaked in his face and his touch as Scott, my husband, clipped the umbilical cord. The nurse briefly took the baby from me to weigh and measure him, giving him an Apgar Score of seven — he was healthy. Sooner than I expected, Scott and I were left alone in our room with our little newborn. Scott pulled out his video camera, capturing my pure happiness as I gazed at our new son. I noticed the camera, looked at Scott, and smiled. “Look,” I said, pointing to Scott, “it’s Papa.” Our baby wore two little white gloves to prevent him from scratching his face. On his pink head was a striped newborn beanie provided by the hospital. As Scott zoomed the video camera closer, our baby’s tiny mouth formed a perfect O as it rubbed against his gloves in search of his thumb. Our baby was born at 7:16 p.m. We named him Charles. Charlie’s only birth complication was high levels of jaundice. The doctors made him wear a mask to protect his eyes and intermittently laid him in the neon blue jaundice pod to decrease his bilirubin levels. Once the levels lowered to a safe amount, we were discharged to go home. I placed Charlie in the carseat and it practically swallowed his tiny body. He was born 7 lbs and 4 oz but had lost a few ounces, as was typical for the first few days after birth before a mother’s milk comes in. They wheelchaired me out of the hospital even though I could’ve walked, and Scott pulled the car up to the hospital entrance, clicking the car seat in place while I transitioned from the wheelchair into the passenger seat. We were greeted with blue balloons and a banner that said “It’s a Boy” hanging between the French doors that opened up into our dining room. Blue and white plastic binkies had been added to the Christmas Tree that decorated the living room. It was mid-December. Late on Christmas Eve, I woke up to Charlie’s cries and took him to the living room to feed him by the light of the Christmas lights on the tree. The room shimmered around us as I watched Charlie’s little mouth, starting as a small O and turning into a grin. He looked up at my face, full of love. We had invited a few friends over for a Christmas Eve program earlier that evening. We didn’t live near family but we wanted to make the holiday special. We filled our bellies with ham, rolls, pomegranate salad, mashed potatoes and topped the meal off with pie. Scott shared a Christmas message. “I watched Shelby give birth to Charlie and was surprised at how messy it was,” he said. “I started thinking about Jesus born in the manager and how it was probably messy, too, different than I used to imagine it.” His voice broke as he continued, “Charlie is the best gift we’ve ever been given.” I looked down at little Charlie, wiggling around in my arms, my heart full of tenderness. He started rooting and fussing so I went into the backroom during the program’s reading of “A Cajun Night Before Christmas” by James Rice, a Louisiana Christmas tradition. “T’was the Night Before ChristmasAn’ all t’ru de houseDey don’t a t’ing passNot even a mouse.De churren been nozzleGood snug on de flo’An’ Mama pass de pepperT’ru do crack on de do’.” I heard the voices of our friends through the walls, closing my eyes with a soft smile as I listened, rocking back and forth in the rocking chair, Charlie suckling in my arms. A healthy human being has an unconscious amount of tension in their muscles, even when relaxed or asleep. My newborn had this normal muscle tone, too, for exactly 54 days. Only weeks after Christmas, Charlie’s legs stopped moving. A large tumor compressed his spinal cord causing partial paralysis and he was diagnosed with a rare form of infantile cancer — primitive myxoid mesenchymal tumor of infancy. That first Christmas with him — the one we were ignorant of his illness — will always feel like “the honeymoon.” The calm before the storm. Tranquility before chaos. Euphoria before depression. The following year, Charlie went through nine rounds of chemotherapy, 28 doses of proton radiation, sepsis and multiple surgeries. I struggled alongside him with the agony that accompanies motherhood — the agony that accompanies love. When December finally came around that year, Charlie, my husband and I had long since depleted any energy or vitality we began his cancer treatments with. Charlie’s last dose of chemotherapy was on December 9, 2019. That last dose was Charlie’s last day of cancer treatments, and signified the beginning of his remission. It took a few weeks for his blood counts to rise enough that he felt well and acted like himself. If Charlie’s first Christmas was a symbol of his birth, his second Christmas was a symbol of his rebirth. Blood returned color to his cheeks and the first signs of hair emerged through his bald head. He had another chance at life. We are approaching Charlie’s third Christmas. Charlie’s thick beautiful blonde hair has grown in, necessitating multiple haircuts this past year. His paralysis has improved. Though his lower body will always have low muscle tone and loss of sensation and strength, he can now use a posterior walker. He can lift his legs off the floor and swing himself in his walker with his arms. He can run around the house, bumping his walker into the sides of tables and couches like he has his own personal bumper car arena. Charlie is chatty. He knows his letters and can count to 10. He loves to sing Christmas carols with us. He is a happy child. This year, I can’t help but think that this picture of Charlie in his walker and our family’s personal sentiment towards Christmastime echoes the hope and encouragement that comes into focus and sparkles during the Christmas season. We hope Charlie remains in remission and that we have many future Christmases to celebrate and create traditions with him. Since he was born, I will always take a moment to sit alone near the Christmas tree and remember the suckling baby who cooed and smiled at me, his face lit up by the lights on the tree. I will remember that Christmastime was the backdrop that first displayed his life and it was Christmastime that renewed it.

    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.

    Ali Wymer
    Ali Wymer @aliwymer

    We Need to Have Tough Conversations About Pediatric Cancer

    As human beings, in many situations, we choose to turn away from or not listen to things we deem unpleasant. I even find myself doing this sometimes. It’s only natural that we choose to see the good or happy side of things because if you focus on the ugly or bad side, it can take a toll on you mentally and emotionally. But, turning away from the “ugly” or refusing to listen to the facts no matter how hard they may be to accept can be a road block to making a difference in the world, and in my case, in the pediatric cancer world. It’s no secret that we don’t like to see anyone struggling or in pain, much less see this happening to kids because, let’s be honest, cancer is painful and not always pretty. There is no doubt about that. But, many people don’t see the struggles and hardships these kids go through. I am not saying the happy parts aren’t something people should see, but I think you have to show all parts, good and bad. The truth is that pediatric cancer is still the number one killer of the nation’s children. There truly is nothing good about that and it is hard to put a pretty spin on it. This is something people do not want to hear. They would rather hear that 80% of kids survive five or more years now. This is a much less scary statistic that sounds a lot nicer. But, unfortunately even those who do survive are now very susceptible to other issues that could last a lifetime. Survivors are now opened up to the possibility of complications due to the treatments they received. Treatments that are sometimes decades old and are meant for full grown adults, putting these medications into tiny bodies can also cause some issues even years after treatment is over. This is frustrating because life shouldn’t be this way after treatment is over. Life should be “normal,” but it isn’t. I won’t sit here and say that it is all ugly and scary cause it isn’t there are some positives to this life. These kids are truly resilient and can teach people two, three times their age many lessons about life. Like, making a difference that can better the world, living your life to the fullest you can, not to focus on the small things and work to achieve your dreams and never stop. I want and I think people need to know all sides of the pediatric cancer world because what you see is not always all of it. These kids are resilient, but it’s not always just these little bald kids playing and having a fun time in their hospital rooms. They struggle and sometimes the struggle is more than most can imagine. I think if we don’t show all sides of it, people will believe there is not much work to be done in terms of pediatric cancer. But, more than ever, there is so much that needs to be done, even though there have been major strides and there continues to be more every day. Pediatric cancer is scary and I know people don’t want to see it or talk about it, but unless we do and more people demand change, these kids will continue to be left in the dark. Speak up for those who may not be able to speak for themselves.

    Ali Wymer
    Ali Wymer @aliwymer

    It's OK to Be Angry and Sad About Losing Your Childhood to Cancer

    When people talk about their experience with cancer and the treatments they endured, they will often speak of the things that cancer didn’t take from them. While cancer can’t take everything from you — like hope, faith or courage — it is capable of taking things from you that are impossible to get back. Being a kid you have barely experienced anything and now you don’t even have the option. So it’s OK to be angry and sad about all the time and opportunities you may miss out on during and after treatment. The most prominent thing that is taken away from being a kid with cancer is to simply be a kid. Your life is no longer the life envisioned by your parents and loved ones. It’s no longer about going to soccer practice, school field trips, birthday parties and so much more. Instead it is endless doctors appointments and day after day spent in the hospital. Your life is now focused on keeping you healthy and alive. When you go into remission from a pediatric cancer diagnosis this should be the end, right? Life should start to return to normal and you should go back to being a kid. But this is not the reality of a childhood cancer survivor. The best way I can describe life after cancer is that it feels like you’re still stuck and your waiting for the next shoe to drop. I wonder to myself, does this feeling ever go away? Will I ever get to feel like everyone else around me who seems to have a carefree life? I think more than anything in life I just wanted to feel like everyone around me. My friends always seemed to be more carefree and just able to have a good time, whereas I felt out of place. I have learned throughout my young life that this has come from the unfortunate aspect of having no choice but to grow up and become mature before I was even in middle school. I missed out on a lot of things and that has left me somewhat bitter and angry. Childhood cancer is the monster that never leaves my mind. What childhood cancer didn’t take away is my hope that one day there will a better treatments and maybe even a cure, so kids will have the opportunity to live their lives. It also didn’t take my courage to face every day with a smile and wanting to do more for kids like me, so they have the opportunity to just be kids. It’s OK to be angry, but I have also learned that instead of letting anger affect your whole life and how you live every day, you can use it to make a difference in the world. Demand that childhood cancer be made a priority and demand change so kids can have the opportunity to live like everyone else.

    Jodie Pine

    Lessons Learned About Parceling Out My Plate Since Becoming Caregiver

    I meet you as we’re waiting in line for lunch at the hospital cafeteria. We’re both a bit bleary-eyed from successive nights of tossing and turning on the sofa beds in our childrens’ hospital rooms. You ask if I want to join you at a quiet table near the window, with a perspective (although limited) of the outside world. As we slide into the stiff plastic chairs and manage to fit both of our trays on the compact table, you say, “ You’ve got a lot on your plate.” I smile because I know you’re not referring to the food I’m about to consume. “ You too, ” I respond knowingly, because having a full plate comes without question to the role of being a caregiver. “ How are you managing? ” I exhale deeply as my tense shoulders relax and I give thanks for you, my new friend, who has seen me and cares about how I’m doing. I stir two packets of sugar into my iced tea and take a long sip before I begin so I can collect my thoughts. “ Stumbling through these past two months has taught me a few things about parceling out my plate, and I’m clearly doing better in some areas than others. ” You nod as I go on. I’ve learned that sometimes I can say “no” to what gets added to my plate. After my son’s admittance from the ER to the ICU in January, I decided, when I caught glimpses of news headlines, that I just couldn’t take on i mpeachment or Iran. News-worthy events that I would have followed under normal circumstances I could pretty easily choose to keep off my plate. When a loved one shared concerns with me about our family’s future, it hit closer to home than the news, but in a similar way I made the decision not to internalize those worries. I could hear them and even acknowledge them without taking them on myself. I certainly didn’t need any more reasons to stay awake at night. I’ve learned that sometimes I have to take on my plate what I would rather not. Our son who was not hospitalized dealt with some medical issues himself: stomach pains, bloody noses, fever plus cough. Each time an issue emerged, I told myself I really didn’t want to take on anything that felt “extra.” But his needs required attention that I wasn’t able to take off my plate. In an effort to pay better attention to that son’s emotional needs and not wanting him to experience the Forgotten Child Syndrome, I contacted his school guidance counselor to let her know what was going on with our family. I also found a counselor through our church for him to have the opportunity to process the complex issues of his life. I’ve learned that I need to regularly touch base with my husband on the status of our plates. As a parenting team, we are trying to juggle physical therapy,occupational therapy, speech therapy, music therapy, doctorappointments, overnight hospital stays, and home-bound tutoring, as well as our other son’s school activities. But we don’t want our conversations to only be about scheduling, insurance paperwork, blood count numbers, or medications. We need to intentionally take breaks from the Cancer Center our lives have been revolving around. While my husband and I are journeying through our son’s cancer together, we’re different people with unique roles in life, so our plates are not the same. Finding out what each other needs to let go of and what we each need more of is crucial to “sharing the load,” as our default reaction to the added stress in our lives would be to find fault with each other. Carving out time to listen to each other’s hearts and to ask “ What do you need right now? ” is an area we’re currently working on. I’ve learned the importance of answering the question, “What do you need on your plate?” It’s important to identify what brings life and what drains it. In order to make my life as a caregiver sustainable for the long-haul, I need to be sure my life-giving activities outweigh my life-draining ones. Topping my introverted list of what fills me up are reading, writing, taking walks, meeting with friends and family face-to-face or over the phone, spiritual direction, dates with my husband, and connecting with a soul care mentor who has been through cancer. I also just made an appointment today to see a counselor next week. Sometimes people ask the general question, “ What can I do? ” and sometimes they offer practical suggestions. One of our most helpful offers was my mom flying out to support our family during our son’s first round of chemo. Because she and my husband handled both the hospital and our home together, I was able to attend a four day retreat as part of my two year Soul Care Institute program. Thinking through the specifics (meals, rides, childcare, etc) that will enable us to get more of what we need on our plates, will allow others to help us thrive and not just survive as caregivers. Now that you’ve finished your lunch, I’m interested in hearing your story (I pick up my turkey sandwich and ask how you’re managing). What have you learned about parceling out your plate these days?

    The Truth About Childhood Cancer and Hair Loss

    September is Childhood Cancer Awareness Month. Gold is the awareness ribbon. “It’s only hair. It will grow back.” My daughter was just 7 years old when she was diagnosed with a malignant primitive neuroectodermal tumor (PNT) in her brain. Her treatment included high-dose radiotherapy to her head and spine, several intravenous chemotherapy medications and stem cell rescue. The radiotherapy took her hair; first at the targeted site – tufts and clumps similar to molting – then eventually all over. As a mother, as her mother, it was a harrowing experience – one that slapped me squarely into reality that my child, my daughter, my 7-year-old, really did have cancer. “It’s only hair. It will grow back.” The chemo ate her eyebrows. And eyelashes. And body hair. She shivered with the cold and wore knitted beanies – not to hide her baldness, but to keep herself warm. Weeks after the cancer treatment concluded, the miracle of hair growth restarted – although not at the radiation site. We quipped that her cancer had been blasted so well, that it blasted her hair along with it. She is now six years off treatment; six years of being a cancer survivor. The permanent alopecia she has been left with is a daily reminder of what she has been through. And how far she has come. “It’s only hair. It will grow back.” Did you know? Hair loss can be a common result of cancer treatment. Hair loss is called alopecia. A major function of hair is to insulate the body. Radiotherapy to the scalp can permanently damage hair follicles. Chemotherapy destroys fast growing cells – cancer and hair. Hair loss can range from mild thinning to full baldness. Hair loss may be gradual or rapid. Head, body, pubic, eyebrow and eyelash hair may all be affected. Hair may grow back thinner, a different color or texture or not at all. September is Childhood Cancer Awareness Month. Gold is the awareness ribbon.