CureSearch for Children's Cancer

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CureSearch is a national non-profit on a mission to make sure there are better, less toxic treatments available to every child diagnosed with cancer.
Scott Cohen

Volunteering for Kids With Cancer Has Changed Their Lives (and Mine)

From a young age, I always enjoyed working with children. Kids are full of positivity and never-ending surprises, and there’s something so gratifying about witnessing, or playing a role in, their personal growth. So, when a college friend presented me with the unique opportunity to volunteer at a pediatric oncology camp called Camp Ronald McDonald for Good Times, aka Camp, I jumped at the chance. The rest, as they say, is history, and my life has never been the same. My own life had already been touched by cancer: My father and a few friends have been diagnosed, and my grandfather unfortunately passed from this awful disease. As a result, I had a natural affinity for Camp. For cancer to enter a child’s life and deprive them of their youth is horrifically absurd, and if there were an opportunity to alleviate this pain through “fun” and “smiles,” I was 100 percent committed to that cause. Being involved with Camp means the world to me. The gratification I receive from improving lives and creating joy (even if it’s a temporary reprieve from the harsh reality of cancer) is priceless. Personally, Camp helps me put life in perspective and appreciate the little things — from being able to walk to even being able to breathe. Volunteering at Camp is the opposite of a relaxing vacation, but I return more mentally refreshed than I would have on an actual trip! Every summer, I take one full week off from work and volunteer at this enchanted place. There is nowhere I would rather be. My passion for this organization is limitless. I’ve seen it change lives firsthand. I’ve seen sick kids arrive shy, self-conscious and lacking confidence, who leave a week later with an abundance of self-confidence and comfort in their own skin. In a metaphoric way, Camp is a cocoon — it wraps each camper in an unbelievably supportive net, transforming cancer patients back into the children they were meant to be. I could fill a book with the powerful and impactful moments I’ve witnessed over the last 11 years, but my favorite example is from about six years ago. My cabin of 12 9-year-olds was relaxing before bedtime when a conversation began about each other’s scars. Out of left field, one boy shared his surgical scar was seven inches long. Immediately, the cabin responded with a synchronized “Wow.” A second boy responded and said, “Well, mine is 12 inches long!” Again, a perfectly timed “Wow,” but this time, louder. Finally, a third boy, who was typically quiet and reserved, stood and exclaimed, “Oh yeah… mine is over 17 inches long — check this out!” This elevated him to instant superstar status. Where else in the world can a group of children affected by cancer — many of whom have missed out on invaluable childhood experiences during their treatment — live together under one roof for a full week and be comfortable enough to share their personal battle scars? I didn’t do anything to facilitate this conversation, but impactful, natural moments like this happen all the time as a result of the safe atmosphere we create at Camp. These kids demonstrate unbelievable resiliency and strength, made all the more impressive by their positivity. No child should have to fight cancer, but much work remains — only four percent of the National Institute of Health’s cancer research budget is dedicated to funding for childhood cancer, and more than 10,000 children were projected to be diagnosed in 2017. I’m honored to do my part and bring awareness to the cause when I join patients and other adult champions on Northwestern Mutual’s Rose Parade float come New Year’s Day. The float, “Letting Kids Be Kids,” is entirely dedicated to camp experiences like ours, and making this experience even more special is that I’ll be sharing it with one of my unbelievable campers, Chris. I met Chris in 2011 during his first session at Camp. We formed an instant bond and remain close; it’s been a privilege to watch him transform from a young camper into a mature high school senior on the brink of college. Children affected by this horrible disease are superstars and the ultimate heroes. They have dealt with more adversity in just a few short years than most people experience in a lifetime. The positivity I’ve seen them show is mind-boggling, and the physical endurance they have to display during their treatment phase is second to none. They are total inspirations to us all and serve as powerful reminders that more awareness and funding for pediatric oncology treatments are needed. Northwestern Mutual and its Childhood Cancer Program have stepped up to the plate in a big way, contributing more than $17 million and funding over 200,000 hours of research. But we need more companies and individuals to do the same. While I’m utterly appreciative for this upcoming experience with Chris, I want our relationship to be symbolic of the thousands of other unique camper/counselor relationships across this country. While our friendship probably contains more burrito-eating, guitar-playing and goofy jokes than most, each relationship is special in its own way and is equally as deserving of acknowledgement. I’m just one small fish in the sea of adult champions working with pediatric oncology camps. There is so much good waiting to be discovered in this world — we just need to uncover it. We want to hear your story. Become a Mighty contributor here .

Dr. Michele Bell

My Journey of Unconditional Love, and Why I Wrote a Book About It

Miracles come in different shapes and sizes and they happen to all sorts of people. Most would agree a miracle is an occurrence that can’t be explained. If this is true, then I have a miracle to tell you. Miracles don’t always manifest themselves as a major cure or a financial gain. They come in small pieces and often discreetly, where no one ever sees the miracle happen. But they come, indeed. This is the journey of my miracle (which was a new revelation to me). Nicky, my thriving and healthy teenage son, developed a rare form of bone cancer known as Ewing’s Sarcoma. It’s a painful cancer, and one that’s difficult to treat. Not all survive. My son didn’t. But our story does not end there. Many have referred to me as a #CancerMom. In fact, so much so that I started referring to myself as a #CancerMom. But I’m here to tell you a #CancerMom isn’t me and doesn’t define me. I just realized I’m much more than a #CancerMom — I am a miracle. You see, to me, I am a miracle. I say this because my teenage son died of cancer 10 years ago, and our miracle is I am still alive to tell our story and encourage and teach others dealing with childhood cancers and other long-term illnesses. And I’m here to keep his memory alive. I promise you that when Nicky died, I had no idea 10 years later I’d still be breathing, let alone thriving, in the world of childhood cancer. Being a role model for change, acceptance, healing and caregiving. Today I learned that I, Michele, am more than a #CancerMom and more than Nicky’s mom. I’m a living miracle. The hashtag #ChildhoodCancer shouldn’t even exist, but it does, and so I must keep existing to keep Nicky’s memory alive. To fight towards equality with government funding for cancer research, and to teach other kids and parents and caregivers about how to deal with and cope with cancer of all forms (not only childhood cancer). Although childhood cancer has become my specialty. Let’s now add to that specialty Alzheimer’s, as I’m now the sole caregiver to my mom, who is enduring late stage Alzheimer’s and a broken hip. So, along with the energy and purpose to keep Nicky’s memory alive, I struggle to keep my mom, Babs, alive. My son’s friends urge me to be an inspiration to others in my life, the same way that Nicky had in his life and through his death. Don’t assign me the role #CancerMom. I’m just, Michele. I’m also a mom who wrote a book, “A Journey of Unconditional Love,” about the journey my son and I took in the face of childhood cancer. While reading it, you will travel with us through our ups and downs, share in our daily events and get to know the people we met throughout our journey. We will intimately expose (in a most unique approach) how we came to terms together, in the face of our cancer adversity. Our story will make you cry, as well as smile, as you learn through our experiences how death is not the end of life. The book is about the celebration of life and love as seen through the thoughts and eyes of two very vibrant people – mom and son. Our story will be a great value to all who may be experiencing a similar fight in life. Or who’s a caregiver to someone with a chronic or terminal illness. You’ll see our story is a guide to the human soul and its unrelenting power to survive. The story about my son dying of Ewing’s Sarcoma is only part of the magic of my book. My time with Nicky changed everything I knew about love and death. After what was the lowest point in my life, I’ll admit that death, as it turned out, was a gift for me to become stronger, clearer and more certain in my life. It’s also about how I learned to love myself and feel the love of my son, even though he is no longer physically here with me. It’s the story of how I went to the depths of despair only to encounter miracles and magic. My son transformed everyone who knew him and his humor and joy was contagious. The book is about a son’s profound courage and a mother’s own “death of self” to become a rising phoenix. It is about being fully alive while in the face of death. Nicky lit the world around him with his joy and compassion until the day he left this earth. His battle with cancer redefined what I knew love could be. It is a celebration of unconditional love, which is why both Nicky and I grew, loved, lived and became stronger on our journey with cancer. Unconditional love is a rare love; a love without strings, expectations or need. It is the most spacious kind of love and my son gave us each a chance to learn more than we ever could have imagined about love. Finally, this book is about hope. It will make you smile and cry and love every moment of your life and your loved ones’ lives. I hope you’ll treasure this book and want to give it to those who mean the most to you, or to those who are going through a similar experience, as it will help educate them about Ewing’s Sarcoma and other cancers and chronic illnesses. Let our pain become your hope. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Nadezhda1906

Remembering How Hepatoblastoma Took My Childhood Cancer Warrior Away

In November 2015, after months of frustrating ER visits for high fevers, Addie was diagnosed with hepatoblastoma, a rare pediatric liver cancer, four days before her second birthday. At the time of her diagnosis, she had a grapefruit-sized cancerous tumor in her liver, and we were in Colorado for Thanksgiving visiting family. We lived in Alaska, but Addie was treated at Colorado Children’s Hospital so we could stay close to family. Addie’s sister was just 6 months old at the time she was diagnosed. Addie fought a fast-spreading disease with such grace. She shared her contagious smile and joyous spirit with everyone she met. We lived with family because we needed the help, but truly it made every day better for Addie because she got to spend time with the people she loved the most. About halfway through Addie’s treatment, her liver tumor appeared to be chemo resistant, and she was fortunate enough to receive a full pediatric liver transplant. We were truly grateful and moved our life from Alaska to Colorado so she could continue her treatment. However, two months after her transplant, the cancer aggressively spread to her lungs, and five months later, it metastasized to her brain. After 10 rounds of chemo, there was nothing more we could do but comfort her at home. The uncertainty of our military jobs or where we would live seemed so inconsequential compared to what she went through. On December 20, 2016, Addie took her last loving breath on Earth. She left this world as peacefully as she came. Adelaide was a childhood cancer warrior with astounding strength and resilience — three years and 17 days was how long we were given with our precious gift. Addie truly made the world a better place and taught us how to really smile, laugh and cry. She exhibited extraordinary courage, kindness and dignity, choosing to leave us as beautifully as she came. She experienced more in three years than many do in a lifetime, traveling to 11 states, including Honolulu, Hawaii, and Barrow, Alaska. She saw the Northern Lights at 20 below and went to the top of a 14,000-foot Colorado mountain. She loved visiting the PEZ factory in Connecticut and cheering at the Disneyland parades. Adelaide was photographed with me, her grandmother and even her great grandma. Her favorite holiday was Halloween, and she loved simple things like swings at the park, jumping on the bed with cousins and story time at the library with her sister. We are pioneering research for hepatoblastoma through a nonprofit lab and are determined to provide more options in the future for children like Addie. Donating Addie’s live tumor tissue will be the lasting mark she leaves on this world. I have been asking myself for over a year now, “Why wasn’t our daughter among the percentage of hepatoblastoma cancer survivors?” I can only believe it’s because she has a higher purpose to inspire others not to take a moment for granted and to save future children through our research efforts. Children should not have to deal with cancer. Before Addie, I never even knew a child who battled cancer, and now our lives have been changed forever. Never give up hope, and try to accept the help that is offered. People want to help and you deserve it. You can always donate or pay forward generosity later, but focusing on giving our daughter the best life possible and creating as many joyful memories as we could was priceless. Addie gave more to us than we could ever give to her, and for that we are eternally grateful. This post originally appeared on CureSearch for Children’s Cancer. We want to hear your story. Become a Mighty contributor here .

How Cancer Inspired Me to Start Businesses That Make a Difference

My story begins in June of 2008 when, at the age of 10, I was diagnosed with ALL leukemia (acute lymphoid leukemia). Being diagnosed at the age of 10 was a hard thing. I was old enough to understand I was sick, but I did not fully understand the gravity of my illness. I fully remember being told I had cancer. I had been in the hospital for a few days at that point, undergoing many tests to determine what my diagnosis would be. I was eager to be discharged because my grandparents were taking my older sister and me on a trip to Hawaii. I remember my grandfather sitting in my room with me as the doctors had called my parents out. When my parents returned, so did the doctor. The doctor sat on my bed and told me I would not be able to go to Hawaii because I was very sick and I had cancer. The doctor told me I had leukemia, but it was very rare because it was also on my liver. At first I was angry I could not go on vacation, but then it began to sink in that I was really sick. During the next two-and-a-half years of harsh and debilitating chemotherapy treatment, my doctors and parents were completely open about everything I would undergo. I knew every single medication I was taking, every procedure I would endure and I was there for every discussion with the medical team. I really loved being able to learn about the medical aspects of the oncology field and found it all pretty fascinating. While undergoing the treatments I understood everything but the fact of how sick I truly was. It was not until recently that I realized the severity of my case. My diagnosis really forced me to mature a lot faster than most kids because of all I had to endure and witness. On November 3, 2010 I received my last chemotherapy treatment. This November will mark my five years off chemotherapy and I will be finally pronounced cured of cancer. I do not like to dwell on the hardships I have endured but rather look at the positives that have come from my experiences, as I believe any situation can be made into a positive one. My sister Brittney and I knew we wanted to help brighten the sprits of children. Together we created a program through which we bring celebrities to visit children in hospitals battling life-threatening illnesses. We decided since they could not leave the hospital, we would bring the people they watched and admired to them. We currently work with hospitals in Pennsylvania and New Jersey. We’ve personally worked with celebrities such as Nick Jonas, Bridgit Mendler, Cody Simpson, Miranda Cosgrove, Daughtry, SafetySuit, Ryan Beatty, Jana Kramer, Midnight Red, David Cook and Jake Miller. The best part about our program is seeing a child who hasn’t smiled in weeks suddenly smile and laugh, or receiving calls and notes from the parents tellings us how their sick child was finally able to act like a normal kid again. Celebrities have even told us their experience visiting the children has inspired them to write songs. The joy we receive from being able to brighten up the children’s day, even for just a few minutes, is indescribable. In addition to the above, my sister and I have formulated our own all-natural bath and beauty products. We’ve always had a passion for this. After my diagnosis, my skin became very sensitive because of all the medicine I was receiving. We became very aware of all the toxins and harsh chemicals that were in the products we were using. With the strong passion and support from our amazing family we launched our own bath and beauty bakery called The Frosting Company®. Our line of artisan products are free of gluten, soy, parabens, sulfates, phthalates, and artificial preservatives. Within our company we have created a program called Frosting Belles. Our Frosting Belles play an important role in forming a community not only as brand ambassadors, but as people that share the same passion for all-natural bath and beauty products. Everyone in the program has a zest for life, a positive attitude, and strong family/friend values. Our Frosting Belle community is comprised of individuals from all over the country and are of all ages and demographics. One thing I’m most proud of about this company: we are now donating a portion of Frosting Company proceeds to help find a cure for childhood cancer. This fall, I will enter my junior year of high school. I absolutely love learning and I truly cherish the time spent in school because during chemotherapy treatments I was often too ill to attend. Another big part of my life is physical activity. During my diagnosis it was very hard for me to walk — let alone run. After finishing chemotherapy, my main goal was being able to run and play sports again. I am overjoyed to say I have been able to accomplish that goal. Being able to stand on the court and play sports again is an amazing feeling. To me it is important to convey a message of positivity and hope that anyone can make the most of any situation in life. Many do not understand and think it is odd when I say this, but I am truly grateful I had cancer. Having experienced that I have become the person I am today, been blessed to meet countless amazing people that have changed my perspective on life and have also made it my life’s mission to make a positive impact on as many people’s lives as possible. I have gained a great zest and appreciation for life. I know never to take anyone or anything for granted. I am able to stand today as living proof that you can take any life experience and allow that to be a catalyst for something amazing. I know with determination everyone can follow their dreams, as I am following mine. This post originally appeared on Huffington Post. We want to hear your story. Become a Mighty contributor here .

Katie Caldwell

Getting Through Mother's Day After Losing My Daughter to Brain Cancer

I’ve made it through another Mother’s Day. That might seem like a weird thing to say, but the truth is, Mother’s Day has been pretty awful for me since I lost Olivia. Don’t get me wrong, it’s not that I don’t love her brothers, but it’s hard to be happy on this day when one of my kids is missing. This year has been the worst I’ve experienced yet. I spent so much of the past week in tears, remembering her and what it meant to be Olivia’s mommy. And what it still means to be her mommy today. I became a mommy on February 19, 2012 when my twins, Wyatt and Olivia, came eight weeks early via C-section. It was 24 hours before I was able to see them because I was so sick. I had severe pre-eclampsia with pulmonary edema and I spent those first precious hours completely out of it on magnesium while they were whisked away to the NICU. At that time, being their mommy meant spending every waking hour by their side in the NICU. We did kangaroo care. I pumped hundreds of ounces of breast milk. I talked to them. I prayed and I waited for them to get strong enough to come home. After we got home I struggled through the exhaustion that came from being a brand new mom to twins. I had to learn how to establish a schedule and bond with two babies simultaneously. Then when Olivia was 4 months old everything changed. Being her mom no longer had much to do with the normal worries a new parent faces. That was the month my baby girl was diagnosed with brain cancer. And in a moment I had to grow up fast. There was no longer time for me to be scared or overwhelmed. In an instant I became an advocate for my daughter. After Olivia’s diagnosis, being her mommy meant sleeping by her side on a tiny couch in a hospital room. It meant being woken up at all hours of the night by machines beeping, nurses doing vital checks and doctors coming in to discuss details of her case. It also meant waiting in sheer agony while Olivia had surgery after surgery, including a brain biopsy that put her in the PICU for five days. I would pace the halls of the hospital feeling like I could burst out of my skin. It was a desperation I had never felt before. Being her mommy also meant I spent hours and hours sitting in a treatment room while my baby girl was pumped full of chemo. I would bring toys, read her books, sing her songs, and tell that beautiful baby how deeply I loved her, all while willing the cancer to leave her and enter me instead. Over those 16 months I watched my daughter endure numerous MRIs and surgeries. I sat with her while she was hooked up for several days at a time to an EEG machine to monitor her seizures. I learned how to give dosing for anti-seizure medication and was trained on how to access the mediport in her chest. I even had to give her intra-muscular steroid injections and learn how to place a feeding tube down her nose and give her tube feedings. Being Olivia’s mommy wasn’t easy. It was exhausting, actually. I had never felt so tired in my entire life. But I would do it all again in a heartbeat. Being Olivia’s mommy also meant having to take on the most horrible and impossible of tasks. I was alone the afternoon I got the news that Olivia was going to die. I was sitting in the conference room waiting for scan results when her beloved oncologist and nursing team came in and spoke the words, “Your daughter is going to die.” I stared at her while they spoke with every inch of me pleading with God for it to not be true. But it was. And then I had the excruciating task of telling Olivia’s dad and the rest of our friends and family. Being Olivia’s mommy also meant giving my girl permission to give up her spirit. I will never forget whispering to Olivia that it was OK. I loved her but I knew she needed to be with Jesus and leave this pain behind. And at 7:09 p.m. on October 22, 2013 I watched my 20-month-old take her last breath. Just an hour later I handed her over to the coroner and watched her leave our home for the very last time. I let go of her and hit the floor. Today, as I have countless other times, I ache for my daughter. My soul physically hurts because I miss her so much. But being her mommy also meant having the strength to let her go and to continue to be an advocate while she watches from heaven. This post originally appeared on the Olivia Caldwell Foundation blog. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Ruslan_Iefremov

Kaylee Olson

Why My Heart Broke When a Mom in Target Apologized to Me

To the mom who apologized to me for her son’s behavior at Target: Don’t. Don’t ever apologize to anyone about your kids, especially when your kids are happy and healthy. Especially when it’s because they are running around and enjoying life, laughing and playing together. Don’t worry about who they are bothering. Who cares? They are kids. They are healthy. They are happy. They are enjoying their life, just like any typical 2-year-old should. Not long ago, only a few short months back, that was me. I was apologizing for my rambunctious and energetic 2-year-old boy. He would be laughing, running, and screeching entirely too loud while running up and down the aisles, playing peek-a-boo. That was us. We were you. For the first time since my son’s diagnosis with leukemia, I wanted to scream at this woman. I wanted to grab her and shake her profusely. I wanted to tell her that I wish that was me. I wish that was my biggest problem in life — my son’s laugh and who it might bother in public. I wanted to tell her that I wish I could see my baby run up and down the toy aisle at Target. That I was there to pick out something special to celebrate our day 29 of treatment. I wanted to tell her it was OK. Hell, I wish I could even bring my baby to Target, but with his compromised immune system, that could land him in the ICU, or even worse, that could kill him. I wish I could hear my son laughing in a store. I wish I could apologize because he pulled toys off the shelf. After watching my baby lay in a hospital bed for literally a month straight, there’s a whole lot of truth to the saying, “You don’t know what you have until it’s gone.” I can’t wait for the day my sweet boy can enjoy his normal life. When he can enjoy going to the Target toy aisle. I will never take a simple Target trip with him for granted ever again. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Stock Planets

Trish Broome

Caroline Chang Converts Socks to 'Sleevies' to Protect PICC Lines

Caroline Chang is like most moms out there: she loves spending time with her kids. But in 2014, when one of her kids was diagnosed with cancer, the course of her life completely changed. When her son Wes was only 15 months old, he was diagnosed with stage IV high risk neuroblastoma, which affects about 7 percent of children with cancer. Shortly after, he tested positive for N-myc amplification, which is associated with more aggressive tumor behavior. Wes’ diagnosis immediately thrust Chang into the world of pediatric cancer, and it’s what led her to become a “cancer mom” alongside so many others. It was her son’s fun-loving and positive attitude through his cancer journey, and the young warriors she met along the way, that inspired her to invent “sleevies” — cool and colorful sleeves that kids can wear to protect the IV tubes (or PICC lines) that hang from their arms. The inspiration for sleevies also came from years of hospital visits that included chemotherapy, surgery, a stem cell transplant, radiation and immunotherapy. It came from being sleep-deprived and physically and emotionally exhausted. It came from the support Chang received from an awesome husband, her other two kids (Jet and Avery) and amazing family and friends. Chang created her first-ever sleevie after she noticed Wes’ PICC line hanging from his arm at the hospital and at home. Once he started wearing it, other parents commented how incredibly cool and helpful they were, and she made some for fellow patients. Realizing she could help other children facing similar medical issues, she decided to create the Etsy shop “PICCSTAR” for kids who rock a PICC line. The sleevies are made from re-engineered adult socks that have cool designs on them like Captain America, Yoda or the Teenage Mutant Ninja Turtles, and they can even be custom-made. She also created a “Pocket Tank” that kids can wear to keep their chest tubes from dangling. Wes reached remission (or NED status – no evidence of disease) and has remained that way for two and a half years. Today, he’s an active and happy 4-year-old who loves getting dirty, playing in the water and dancing to Justin Timberlake’s “Can’t Stop the Feeling.” His mom knows that not every cancer parent is as lucky as she is, so she wants to honor and celebrate the children currently going through treatment. She hopes that one day, these kids are given a chance to grow up and love life — just like her son Wes is doing today. In other words: she’s one cool cancer mom.

12 Reasons Why Children Who Battle Cancer Are Superheroes

At CureSearch, we believe that children diagnosed with leukemia, rhabdomyosarcoma, neuroblastoma and more are superheroes because they battle one of the most the evil villains known to man — cancer. To celebrate National Superhero Day on April 28th, we asked our dedicated staff members to share why they think children who battle cancer are superheroes. Here are their answers: 1. “Children who battle cancer are superheroes because they don’t let the villain they are currently facing alter their hope for the future.” – Mallory Z. 2. “Children who battle cancer are superheroes because they take on the challenge of treatment with grace, dignity and determination.” – Mary M. 3. “Children who battle cancer stare down the baddest villain, and very often do it with a smile on their face in between rounds of dress-up and Candyland!” – Brecka P. 4. “Children who battle cancer are superheroes because they possess the characteristics necessary to defeat a villain like cancer; bravery, strength, compassion, optimism and willpower.” – Eric R. 5. “Children who battle cancer are superheroes because of their unique traits, creativity, imagination and determination who must fight with all their might, through the longest of nights just to smile at the new sunrise after defeating villains in the dark.” – Amber M. 6. “Children who battle cancer are forever superheroes because not only do they defeat the evil villain cancer one time, but their powers remain with them for a lifetime as they battle secondary cancers and long-term effects from treatment.” – Kelli W. 7. “Children who battle cancer are superheroes because they possess the strongest super powers that come from within. They are the strongest, the bravest, the mightiest of all superheroes!” – Erin. R. 8. “Forget leaping over tall buildings, these kids are superheroes by their strength, perseverance, and the way they still care for everyone else around them! I’ll be a sidekick for each and every one of them!” – Jennifer M. 9. “Children who batter cancer are superheroes because they demonstrate perseverance and grace through the battle.” – Kathy B. 10. “Children who battle cancer are superheroes because they fight with all their might to conquer the beast!” – Sarita S. 11. “Children who battle cancer are superheroes because they never stop fighting! They change the lives of everyone they touch.” – Michelle M. 12. “Superheroes have no interest in being victims — they take on the bad guys head-on. They just fight. That’s what our kids do — they just fight.” – Mary B. Help us fight the villain cancer by donating toward lifesaving research. Help us give every superhero a chance to live a longer, better and healthier life. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by Choreograph

Selma Sulejman

My Mom's Battle With Idiopathic Thrombocytopenic Purpura

Mom: a three-letter word that can consist of so much meaning and emotion. Gulsefa Kazimoska, age 52, mother to two daughters, knows a thing – or perhaps a whole novel – about the good and the bad that life has to offer. Born and raised in the Republic of Macedonia, my mother is the oldest of four. She was the only girl in the household, so she was always being spoiled by her family in the most loving of ways. Just as life would suggest, my mom got married as a young woman and migrated to the US. She dreamed of a better future because her homeland has been, and still is, deeply underdeveloped. Moving to America, my mom had many positive things happen to her, but sadly, that is when she started having health issues. Initially, she was diagnosed with a kidney disease, which led to kidney failure. She was immediately started on dialysis, which made her extremely sick and required specific dietary care. At that time my older sister, Edis Kazimoska, was in her early teens. She had to start taking the necessary care for mom. Not only that, she also had to care for me, her totally blind sister. Can you imagine a young teenager, who is supposed to be concentrating on her education and enjoying time with friends, instead taking on some majorly intimidating adult tasks? I can’t! The difficult, but loving journey taking care of mom continued. Then one day there was a ray of hope. We found out that our grandmother’s kidney was the perfect match for my mom’s. On February 24, 2000, my mom received a life-changing gift that to this day, is still going strong. Though her new kidney demands frequent doctor visits, daily meds and blood screenings, we are so thankful to our grandmother for allowing us to continue to live life with mom. So we can take a breath now, right? Wrong! Somehow we found ourselves back in a cold, wooden box, screaming and crying with fear and hurt. In 2006, mom became very ill once again. She had a splenectomy done because of a very low platelet count. She endured trial after trial of toxic chemo drugs such as intravenous immunoglobulin (IVIG), Rituxan, Vincristine, and so much more. Finally, we got the correct diagnosis: she had idiopathic thrombocytopenic purpura (ITP). After having surgery, mom was in remission until 2012. Then the monster was back, this time more aggressive than ever. Mother’s case was beyond complex because she was resistant to all of the chemo-induced drugs, and worst of all, nothing would bring her count above 10,000. We needed to try everything we could to help the situation. So there we were, once again, feeling scared that we will lose her to this dangerous blood disorder. It felt like it had taken over our entire lives. During this time, I was preparing to graduate with an undergraduate degree in diplomacy. But I just couldn’t fathom this indescribable, ugly and heart-wrenching feeling that was going through my entire body. I asked myself questions like, “Will Mom be there for graduation? Will she live to see my nephew grow to be a young man? Will she see me get married one day and meet my children?” My biggest fear suddenly became the thought of losing my mom and waking up one day, never hearing her voice again. Everything seemed unjust and unfair to me in the world, until one day, an innovative drug turned my frowns into hopeful smiles. It took Mom’s everlasting energy, but a few months before graduation, doctors finally put her on the Nplate. It worked its magic on mom’s count, and slowly but surely, it brought her back to a somewhat stable life. It was smooth sailing from 2013 until 2016, when doctors decided to take mom off the Nplate. She had been doing well without it, maintaining stable counts. And then our short-lived life of normalcy came to an abrupt end when she relapsed for the second time. This time around the Nplate was induced immediately. It took a long period of time for her body to recognize it and start reacting. Transfusions, long days in the hospital, and watching her gasp for her breath were all I could remember then. Currently, my mom is on a weekly dose of Nplate, which helps control her ITP. She still continues to face severe, ongoing issues such as diabetes, hypertension, pulmonary complications, and so much more. Despite all of mom’s hardships, she is still here, pushing forward with her all. Though we do not know what tomorrow holds with her health, we are deeply blessed and grateful to have her with us each morning when we wake up. I could not imagine life without her. Unconditional love and my nephew’s special bond with her are just some of the little things that keep her going. She is able to find those minor specks of happiness and lean on them because to her, the little things are what matter the most! More awareness needs to be given to ITP, and we need to raise more funds for better treatment options. I am on mission to create a change in this fatal disease, as well as many other blood cancers-disorders. I hope to one day create a marathon that is specifically geared towards ITP, and I hope it creates hope for other patients and their families. From our family to yours, never lose hope! We want to hear your story. Become a Mighty contributor here .

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 .