Childhood Cancers

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    Community Voices

    A return to health after cancer treatment

    <p>A return to health after <a href="https://themighty.com/topic/cancer/?label=cancer" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="cancer" title="cancer" target="_blank">cancer</a> treatment</p>
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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.

    Community Voices

    How has cancer impacted you or your family’s health story?

    <p>How has <a href="https://themighty.com/topic/cancer/?label=cancer" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="cancer" title="cancer" target="_blank">cancer</a> impacted you or your family’s health story?</p>
    Community Voices

    Children's cancer awareness rocks

    <p>Children's <a href="https://themighty.com/topic/cancer/?label=cancer" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="cancer" title="cancer" target="_blank">cancer</a> awareness rocks</p>
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    Community Voices
    Community Voices
    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.

    Community Voices

    Rare chronic disease awareness

    Every week and month, sometimes daily, I read about a rare or chronic disease awareness day (week, or month). As someone who has been diagnosed with such a illness and helps to run a national patient group for those who have this disease, I wonder how we can now stand out in a crowd of a hundred autoimmune diseases and over 7,000 rare diseases according to NORD. Then consider the common diseases that overshadow us.

    We all have a central message: "We have ________and need effective treatments and cures." With such a universal endpoint as our goal, how can all of us be heard above the din?

    There are broader based groups such as The American Cancer Society, American Lung Association, American Heart Association and many, many more. These groups tend to focus on patient education and advocacy/policy efforts at a national level. And yet the "little guys", often patient founded and volunteer run groups and organizations need to be heard as they are often those "in the trenches", experiencing the daily burden of their disease.

    Pediatric diseases and disorders make up about 90% of all rare diseases, without a treatment according to Global Genes) , and too many without any research efforts ongoing at all. This is dismal and doesn't represent our country's health care objectives. The same is true for adults.

    While we willingly treat heart disease and its consequences without shaming the patient, liver disease has an enormous stigma about lifestyle choices which can cause liver disease (alcohol abuse, illicit drug use, unsafe sex practices), most of the liver hundred liver diseases known are not caused by lifestyle choices.

    According to www.pinmart.com, these are some (edited for space) of the other awareness days in September:

    September 21st: World Alzheimer's Day (Purple)
    September 29th: World Heart Day
    September 5-11: Suicide Prevention Week (Teal-Purple)
    Childhood Cancer Awareness Month (Gold)
    Gynecologic Cancer Awareness Month (Teal)
    Leukemia Awareness Month (Orange)
    Lymphoma Awareness Month (Lime Green)
    Sickle Cell Awareness Month (Burgundy)
    Ovarian Cancer Awareness Month (Teal)
    Prostate Cancer Awareness Month (Light Blue)
    National Alopecia Awareness Month (Blue)
    Thyroid Cancer Awareness Month (Pink-Teal-Purple)

    Then there are awareness colors. Our organization has a medium bright green for our Awareness Ribbon but over the years, others have chosen this color as well.

    September is PBC Awareness Month. This is the disease awareness effort I most relate to. Thank you to The Mighty for allowing me to add my day to the ever-growing list to be aware of. #Pbc #pbcers

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    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.