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Washington post sick kids try to remind Congress what the health-care debate“Is she okay?” the startled legislative staffer asked, eyes shifting to the adults around him as the trach tube protruding from the neck of a 2-year-old gurgled.In the air-conditioned, marble halls of Congress, you often hear the click of heels as staffers rush from room to room or the booming voices of our nation’s representatives making a pitch for some legislation. You do not hear the gurgle of a trach tube. Until this week. “Let me just suction,” one mom said as a blue-suited staffer’s eyes widened at the strange sounds coming from the toddler in pigtails. “We could see it in their eyes, most of them have never seen a child with a trach tube,” said Elena Hung, one of the moms who on Tuesday walked the halls pushing her child’s giant medical rig, showing Capitol Hill folks the actual kids their wheeling, dealing, backroom bargaining and political gamesmanship will affect in the repeal and replacement of the Affordable Care Act.

Read more.

Lyon, France, 11 April 2017 – An international study coordinated by the International Agency for Research on Cancer (IARC) and published today in The Lancet Oncology shows that in 2001–2010, childhood cancer was 13% more common than in the 1980s, reaching an annual incidence rate of 140 per million children aged 0–14 years worldwide. Part of this increase may be due to better, or earlier, detection of these cancers.

Based on information collected globally on almost 300 000 cancer cases diagnosed in 2001–2010, the study showed that leukaemia is the most common cancer in children younger than 15 years, making up almost a third of childhood cancer cases. Tumours of the central nervous system ranked second (20% of cases), and lymphomas accounted for 12% of cases. In children younger than 5 years, a third of the cases were embryonal tumours, such as neuroblastoma, retinoblastoma, nephroblastoma, or hepatoblastoma.

Click here to read the full press release.

Nolan’s Story

We would like to extend our deepest condolences to the family and loved ones of Nolan Scully, who earned his angel wings on February 4, at the age of four, after a long and hard-fought battle with Rhabdomyosarcoma. At every stage of his fight, through intense chemotherapy and harsh radiation therapy, Nolan showed the courage and perseverance of a true childhood cancer warrior. His story, as told by his loved ones, is an inspiration to us all, and a reminder about the critical need to find a cure for this deadly and devastating disease.

Nolan’s Story, in the words of his family:

nolan“In October 2015, three-year-old Nolan came down with a stuffy nose which a parent typically wouldn’t stress over; that is until Ruth, his mother, noticed her son began snoring and having difficulty breathing. Doctors thought it was a severe sinus infection and prescribed Nolan some potent antibiotics, humidifier, and saline spray. The regime didn’t help.

“After an emergency appointment with an Ear, Nose and Throat (ENT) specialist, it was discovered that Nolan’s adenoids were extremely swollen and surgery was needed. In November 2015, Nolan had his adenoids and tonsils removed.

“A few days after the operation, Nolan’s biopsies came back. Nothing could prepare a parent for what was about to happen next. The doctors told the Scullys that Nolan had a rare and aggressive form of cancer called Rhabdomyosarcoma. This type of cancer is every bit of cruel in its silent relentlessness.

Rhabdomyosarcoma Childhood Cancer

“There are two types of muscle cells in the body: smooth muscle cells and skeletal muscle cells. Smooth muscles control involuntary activities and skeletal muscles control voluntary activities. Rhabdomyosarcoma (RMS) is a malignant tumor (cancer) that rises from a normal skeletal muscle cell. About four children per million healthy kids under the age of 15 will develop RMS each year. It is most often seen in young children under the age of five. Nearly 40% of all RMS cases involve the head and neck region.

In an instant, the Scully’s lives were turned upside down and life would never be the same. There’s an intense shock, confusion, anger, disbelief and overwhelming sadness that comes with such a diagnosis. Paralyzing fear doesn’t begin to describe the panic his parents felt. On top of all that, Ruth was pregnant. How can a mother enjoy her pregnancy when one life is growing while another is suddenly sick with life-threatening cancer?

“The Georgetown University Hospital’s Pediatric Cancer Clinic immediately took over Nolan’s case. PET Scans, CTs, and bone scans were ordered. Because the doctors had discovered an obstruction (tumor) in Nolan’s nasal airway, sedation for his tests wasn’t recommended. Instead, Nolan was admitted to the Pediatric Oncology unit where he was put under general anesthesia for the procedures. The surgeons also put in a chemo port.

“That was one of the most hardest, most terrifying things we’ve ever had to experience… seeing our beautiful baby hooked up to a ventilator machine,” Ruth explained.

The family was heartbroken and beyond devastated to learn that Nolan’s tumor was considered inoperable. However, his tumor appeared to be isolated to his nasal pharynx which is right through the nose and right above the throat.

Just like that, this brave little boy would begin the toughest journey of his life. Nolan would have to complete 43 agonizing weeks of chemotherapy, and that didn’t include the shots, infusions, transfusions, scans, tests and constant blood withdrawals. Imagine the sorrow his family felt in hearing that news..

The Georgetown Hospital Pediatric Oncology Department became Nolan’s second “home” over the next several months, with a . team of care providers who treated him with much love and kindness. The doctors analyzed every possible avenue to heal Nolan from this cancer that had invaded his little body.

Jonathan and Ruth turned to family, friends, and the community for much needed support. The emotionally draining, uphill battle would be impossible to face alone, and they needed to maintain their household and care for their daughter, Leila. Somehow Ruth found strength to begin chronicling her son’s journey on Facebook (NolanStrong).

The downward side effects of chemotherapy kicked in. Nolan started losing his hair and he was very upset over it. His parents comforted him by taking him out to see the Christmas lights around town and it helped cheer him up. Sickness and exhaustion became a regular part of Nolan’s existence, but the amazing Georgetown staff kept Nolan occupied throughout the day with activities such as painting pictures and playing with toys. He had his invisible super hero cape on and he was ready to “kick cancer’s butt!”

Nolan dreamed of becoming a fire fighter like his dad someday.

More of the community began showing their support and participating in fundraisers and benefits. Nolan even received a visit from the Washington Capitals!


nolanstrong
Before the family could even blink an eye, Nolan began radiation treatments in Philadelphia (February 2016). Ruth kept Nolan’s followers informed of his struggles. Fevers, headaches, vomiting, ear and eye pain became a part of his daily life. At almost four years old, Nolan weighed only 13 pounds more than he did at six months of age.

Fire services continued to show their love and support. The East Farmingdale Fire Department sent gifts. Then, the Philadelphia Police Commissioner inducted Nolan as an Honorary Police Officer. Nolan was so excited!

Summertime came around but cancer and a weakened immune system had robbed Nolan of so many fun activities. He couldn’t attend a planned Nationals baseball game, go swimming or play in the sand. But Nolan had a warrior mentality and he told his mom, “That’s okay, Mommy. Once I get my cancer out I’ll be able to do anything I want.” So, Nolan’s parents scheduled fun activities whenever possible. They visited Jurassic Quest and the National Harbor. He also got to shoot hoops with the Washington Mystics. Family and friends coordinated more fundraisers. The outpouring of support was incredible.

By August 2016, Nolan’s health took a turn for the worst. Testing revealed Nolan’s cancer cells were still very much active. August 29, 2016 was supposed to be his last day of scheduled chemo. Ironically, and with great sadness, it became his first of 50 more rounds of scheduled chemo, and this batch would be far more potent. Additionally, a different kind of radiation would be considered and possibly surgery, his parents were told.

Through all the chaos, heartache and disappointment, time would pause for just one day. On September 7, Nolan celebrated his 4th birthday. Family, friends, schools, and the community sent Nolan gifts, cards and get-well letters.

Later that month, Ruth shared a sentimental moment with Nolan’s Facebook fans. While lying in bed one evening, she laid her head up against Nolan with her eyes closed. Nolan thought his mother was asleep. He kissed her on the forehead and whispered, ”I’m so lucky to have you as my best girl.” Ruth went on to say that she felt like the lucky one. ”Lord, please spare my child and let him win against this beast of a cancer,” she later wrote.

In October 2016, Nolan underwent a 12 1/2-hour surgery to remove the  tumor, and bone-grafting to repair damage caused by the tumor. The following weeks were incredibly difficult and painful, especially as the cancer spread into his lungs and Nolan underwent yet another surgery. Sadly, the tumors spread around his heart and there was nothing more the doctors could do.

Nolan earned his angel wings on February 4, 2017.
“Nolan went through more tragedy as a four year old than most adults go through in a lifetime, yet throughout it all, Nolan was courageous and fighting. He is a real-life superhero—a conqueror. He has united thousands around the world, and inspired so many.  He gave us hope and we will miss him so much.”

#NolanStrong forever

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

 

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

“We Are One”: The World Comes Together for International Childhood Cancer Day 2017!

“We Are One!” Today—Wednesday, February 15, 2017, International Childhood Cancer Day—the world will come together to honor and celebrate the hundreds of thousands of children and families the world over whose lives have been forever altered by childhood cancer. We invite you to join us today, International Childhood Cancer Day, to highlight the critical need for concerted global action to fight this devastating disease. We believe that childhood cancer is curable, and that every child, in every country, has the right to basic health care, to specialized diagnostic tools and advanced treatments, and to a happy, healthy life during and after treatment for childhood cancer.

Screen Shot 2017-02-14 at 7.56.32 PM

The Hard Facts on Childhood Cancer…

Childhood cancer affects children and adolescents in every community, in every country, in every part of the world. There are 300,000 new cases of childhood cancer diagnosed every single year around the world: 215,000 in children under the age of 14 and 85,000 in adolescents between the ages of 15 and 19. Yet we believe that many more cases of childhood cancer go unreported due to lack of national and international childhood cancer registries. And we believe that many more cases of childhood cancer go undiagnosed and untreated due to lack of access to even basic medical care, especially in low-income countries.

Childhood cancer incidence is increasing globally. In high- and middle-income countries, childhood cancer is the number one cause of non-communicable disease-related death in children and it is on track to overtake infectious disease as one of the highest causes of disease-related deaths in low-income countries. Yet while the number of new childhood cancer cases is growing, equitable treatment for childhood cancer is not. In high-income countries, survival rates for the most common forms of childhood cancer can average 84%, while survival rates in low- and middle-income countries—for those same forms of cancer—may still be as low as 10%. The simple fact is, children is low- and middle-income countries are more likely to die from childhood cancer than children in high-income countries.

And What YOU Can Do!

Please use and share this Childhood Cancer Infographic:

Screen Shot 2017-02-14 at 8.36.09 PMThe goal of International Childhood Cancer Day is to bring awareness of the stark realities of childhood cancer and to advocate for “Better access to care for children and adolescents with cancer everywhere.” To make this goal a reality, stakeholders from the healthcare and research communities, parents and families, and community advocates must come together with national governments, civil society organizations, non-profit groups, and local communities to ensure equal access to appropriate care and support at every phase of the childhood cancer journey—from diagnosis through treatment and survivorship. Only by coming together in solidarity with a common goal can we help ensure that children everywhere, in every country, have the chance to survive childhood cancer and live long and meaningful lives.

Not only on International Childhood Cancer Day, but on every day, we hope you will work together with us to:

  • Ensure support for children with cancer everywhere: Access to basic health care, as well as access to safe, timely, and high-quality cancer care is a human right, but one which thousands of children around the world are denied.
  • Advocate for new and better research options: Children are not “little adults” and require both specialized medications developed specifically for their developing bodies and specialized medical facilities designed to handle the unique needs of children.
  • Spread the word: Join the global chorus of voices raising awareness about childhood cancer. We encourage you to use these infographics to help spread the word about childhood cancer, and the needs of the children and families battling this disease, throughout your community!

Because kids can’t fight cancer alone!®

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

or additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:


PJammin’ in Colorado: An Amazing Two Nights at Rock Bottom Breweries!

Wow, what an incredible two evenings at Rock Bottom Breweries in Colorado last week! ACCO would like to thank everyone who helped to make these two amazing PJammin’® events—at Rock Bottom Westminster on December 6 and Rock Bottom Downtown Denver on December 7—a resounding success. We were overwhelmed by the spirit of hope, love, and generosity demonstrated by staff and guests alike!


When so many people come together to help make this type of special event a success, it is difficult to know where to begin saying “thanks”!

gn2a9498So first, we will begin by thanking the five amazing families who were willing to share their personal stories, to take the time out of their busy lives to give us a first-hand glimpse of how childhood cancer has changed their lives forever. Logan, Daisy, Faith, Gabriella, and Sofia showed us just how much courage, strength, and determination is needed to fight childhood cancer every day. And the stories of the Green, Walsh, Sullivan, Kovach, and Scherff families showed us that childhood cancer doesn’t just change the lives of children: it forever impacts parents and siblings as well.

We would like to thank the amazing staff at Rock Bottom Westminster and Rock Bottom Downtown Denver for their enthusiastic support for this incredible event. Not everyone is willing to show up at work in pajamas, but they did so with joy and love to show their support for kids with cancer! Without their hard work all evening, these two amazing nights would simply not have been the success that they were. And we would especially like to extend our thanks to the very special servers—Liesl Wells, Lauren Donner, Alon Morris, Kelly Maunes, Brittany Fitzpatrick, and Mike Cailteux—who selflessly dedicated themselves to making sure our five guest families were welcomed and comfortable all evening, with no expectation of gratuity!

We would like to thank Rod Smith, NFL star and former member of the Denver Broncos, and the many, many guests who dedicated their evening to help make a difference for kids with cancer. The generous contributions donated during these two events will bring a lot of joy and thankfulness to families coping with cancer this year, especially at Christmas, which can be a difficult time for parents already facing medical bills and the many other expenses that quickly pile up when fighting a disease like childhood cancer.

gn2a9647We would like to thank Hope 4 Heroes, ACCO’s Colorado community-based Founding Hope Fund, for their steadfast, on-the-ground support for Colorado families fighting childhood cancer. Hope 4 Heroes was founded by the Green family in order to share their experiences and provide information, advocacy, and support for other families in Colorado who are dealing with a childhood cancer diagnosis. Navigating the unknown and terrifying world of childhood cancer is extraordinarily difficult, and groups like Hope 4 Heroes play a critical role in providing peer-to-peer support, personal connections with others facing the same challenges, and most importantly, hope to children, siblings, and families.

We would also like to thank two very talented and caring individuals, who donated their time and expertise to make sure this event was forever memorialized in photos and video. Thank you to both Photographer, Marie-Dominique Verdier, from MDV Photo and Videographer, Kevin Graham, from Mojo Lab.

Finally, and perhaps most importantly, we would like to thank Kelley Cochran and the team at CraftWorks Restaurants and Breweries, Inc. for giving this event its start and making it a success! These two evenings were just one part of the ongoing Rock Bottom Breweries’ Go Gold® for the Holidays event that kicked off on November 16 and 17. During this ongoing event, portions of the proceeds of sales at all Rock Bottom locations in Colorado between November 16 and December 31 will be donated to ACCO to support its mission to provide high-quality educational resources and learning tools free of charge to families battling childhood cancer. We are extremely proud of our new partnership with CraftWorks to aid and support families coping with childhood cancer!

Join the Fun: Host Your PJammin’® Event Today

PJammin’ events, like these special evenings at Rock Bottom Breweries, can be a fun, engaging way to improve community outreach, build cooperation and team spirit, and help a great cause that everyone can support: the fight against childhood cancer. Children battling childhood cancer often spend days, even weeks, wearing pajamas while undergoing treatment; by inviting participants to wear pjs too, PJammin’ events help build awareness of what children coping with cancer face on a day-to-day basis and show these children that they are not alone in their battle.

If you are interested in learning more about how to host an amazing team-building program that supports a great cause with ACCO’s Signature Corporate Events Program, please visit our website at

http://www.acco.org/corporate-events/ or contact us today for more information!

 

Please click on the left and right arrows to view the entire album below:

Rock Bottom Supports Local Families

 

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

A Celebration of Life: A Survivor’s Story

14137671_1224136984285269_748543319_nThis week, two-time childhood cancer survivor Kara took her GO GOLD® shirt to the skies! Having bravely fought childhood cancer twice, Kara is now living life to its fullest, using the same courage, spirit, and determination which helped her win her battles against cancer to face another fear: jumping out of an airplane. Kara’s long battles with cancer have shown her that there is nothing she cannot achieve and that life is a beautiful gift that too many of us take for granted. Thank you, Kara, for showing us just how high a childhood cancer survivor can fly!

Like Kara, we hope you will wear your GO GOLD® shirt proudly this month (and beyond) to show the world the incredible fighting spirit of all teens and children battling this disease.

  • Our GO GOLD® shirts are still available for purchase; if you would like to order one, please click here.

Kara’s Story, in her own words:

14193854_1224457254253242_2135344604_nWhen I was 14 years old, a little shy freshman in high school, while I was enjoying my teen years my mom started to notice things that I shrugged off. She noticed a lot of bruises appearing on my soft, nearly flawless skin. This didn’t concern me much until I realized I could not keep up with friends as we played tag outside, waking up was more of job than school itself, and my lips were a pale unusual color.


At this point, my mom wanted me to be seen by a doctor. At that time I was living in Woodbridge, Virginia. She took me to a local clinic to have some tests. A doctor quickly looked me over. He decided the best bet was doing some blood test and going from there. At this point, I had no idea that those result would change my life forever.


Not even 2 hours later, the clinic called back and informed my mom that something came back not right and I would need to be seen the following day by a specialist. Early the next day, my mom and I loaded up for an hour drive to Walter Reed Medical Center. We were told to go to Oncology department on the 3rd floor. The word Oncology was foreign to me, although soon it became a word I would have to use too often. My oncologist, my mom, and I sat in a tiny room as those deathly words rolled softly out of his mouth, “Kara…you have Acute Lymphoblastic Leukemia.” he said. My body felt numb, my mind filled quickly with a million questions as I burst into tears alongside my mom. He told us he’d give us a minute and left the room. I sat there squeezing my mom as we cried together.


Soon, this oncology unit became more of a home than a hospital. The day after my diagnoses I was scheduled for surgery to have a port placed. Chemo for me was brutal. Every day was a battle. With all the chemo drugs, steroids, shots, bone marrow biopsies, and tests, I was started to feel like a science experiment and it was 3 year process.


My high school, Freedom High School in Woodbridge, did an amazing fundraiser for me. They raised nearly $10,000 for me at a basketball event. The city also did a story about me in the newspaper. They followed me for 2 weeks in order to be able to see what I was going through and get pictures of me getting treatment.


A year into my treatment, my mom found out she was pregnant. Unfortunately I was hospitalized when she had her gender reveal appointment. It was a bummer. But she brought me a balloon to the hospital and announced it was a boy! When he was 2 weeks old we moved to Iowa to be closer to my mom’s family. My medical records were transferred to The Nebraska Medical Center, where I completed treatment.


After 2 years of chemo and a year of maintenance, I was finally done. I enrolled in college, moved into a dorm and was working full-time. Cancer was a word that was no longer in my vocabulary. I lived a normal life and was working on putting the pieces back together. I was healthy, happy and very much in love with life.


Sadly, this feeling was about to be cut short. Two weeks before my 24th birthday, a biopsy confirmed that my bone marrow was being invaded once again. My marrow was 80% leukemia cells. I was crushed, shocked and speechless really. I was sent to the Medical Center immediately to start chemo. But things were going to be very different this time around. Not only was chemo going to poison my body once again, radiation was going to fry my organs. All this in order to prepare for a bone marrow transplant.


This time was much more difficult than the first time. I had to quit my 2 jobs, un-enroll from my college classes, and say goodbye to my social life. My boyfriend and I were not able to afford rent without me working so we had to move into my mom’s house. But honestly, that’s exactly where I needed to be. My little brother was my comfort through my first go around and he was the second time as well. My mom has been a single parent since he was born. She has truly been the most amazing mom and caregiver that any child could ask for. I don’t think I’d be here today without her and my little brother’s support.


From February 2014 until July 2014 I did intense chemo and radiation. Luckily, the hospital was able to find me a 10/10 donor match. At the time she was a mysterious angel who was living in Germany. Today, she is no longer a mystery. On July 11th, 2014 I received Sabine Euler’s stem cells. The moment they entered my bloodstream, I had a mix of emotions. What if I got GVHD
[Graft-Versus-Host Disease]? What if they don’t work? What if I don’t survive this?


Recovery was extremely hard. I had GVHD of the skin and gut. Treatment for this was the most awful steroid, prednisone. It took forever for my hair to grow back, for the moon face to fade, and to be happy again. My appearance was so unfamiliar. I didn’t look in a mirror for almost a year.


When I reached my 1 year re-birthday, I was closer to being myself than I ever thought I would. For me, this was a HUGE milestone. I was able to go another year with only being admitted one time for a severe sinus infection. I am beyond blessed!


Last month I successfully celebrated my 2 year re-birthday! Yet another amazing day I was able to celebrate. Beside me that day were 3 of my biggest supporters, my mom, my baby brother, and my boyfriend of 6 years who has also held my hand, cleaned up more puke than he wanted, and let me cry on his shoulder for months on end. Family and friends were a big part of treatment.


But the number 1 people I owe a huge thank you to are my amazing doctor, Dr. Gundablu at the Med Center, and my extraordinary German donor, Sabine Euler who is now my big sister!
:) I owe a big thank you to all my caring nurses, Pas, and staff who really made my experience with cancer suck a little less. The Nebraska Medical Center will forever be my second home. Oddly enough, I miss all of them since I don’t go nearly as often as I used to. Without all of them, my life would not be the same.


14182542_1224455207586780_1992057348_nYesterday (Aug. 28th) I went skydiving for my first time ever! And it was a life changing experience on its own. The old me would have never had the guts to jump out of that plane. With this life God has blessed me with once again, I plan on doing everything I was ever afraid of. You know why? Because I am my own limit and I will never allow myself to be limited. This world is an amazing place, with so much to offer. I think some of us don’t stop to see the beauty of it until it is literally slipping out of your hands. Don’t let your life lose meaning. Grab it and hold it tight. For in a matter of seconds it can be yanked away from you. Cancer has shown me so much, so very much. Life is more precious than most realize. Dream big and don’t EVER give up! All things are possible. I am a 2 time cancer survivor and I am in love with this life.

14193834_1224136727618628_1996205164_nAbout the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

To submit a Gold Ribbon Hero’s story, please Click Here

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

Today marks the beginning of Childhood Cancer Awareness Month, September 2016

Each September we hope to raise much needed awareness for childhood cancer and we can’t do that without your help. To start, please take a moment to share this page on your social media profile, in an email or however you would like with your community by copying and pasting this website address http://www.acco.org/blog/childhood-cancer-awareness-month-2016/. Then, learn about the many ways that you, your family and friends, and your community can help:
Childhood Cancer Awareness Month 2016

The Gold Ribbon: The international awareness symbol for Childhood Cancer is the gold ribbon. Wear or display a gold ribbon for everyone to see this month. Put a gold ribbon car magnet on your car, share gold ribbon stickers, wear a gold ribbon pins or make your own gold ribbon Add a gold ribbon to your social media images and add a gold ribbon emoticon to your posts and status updates. Provide gold ribbons for your child’s school, for your fellow employees at your place of work and/or for your church or other group. Click Here to learn more about the Gold Ribbon.

Go Gold®: Change you profile, cover and header images on your social media to gold or gold themed images. Ask everyone you know to show their support by changing their images to gold themed images. You can also wear gold, host a “Go Gold®” event or think of any creative way to share gold this September. Although many colors were considered, gold was agreed upon as the ideal choice for childhood cancer awareness because gold is a precious metal, and is therefore the perfect color to reflect the most precious thing in our lives—our children. Click Here to learn more about Childhood Cancer Awareness Month. (“GO GOLD®” and “GO GOLD for Kids with Cancer®” are registered trademarks of ACCO. ACCO registered the marks to protect the identity of the gold ribbon and GO GOLD expression and its derivations to the childhood cancer cause.)

Wearing Awareness Items: Wearing awareness items such as our awareness shirts, gold ribbons, “Go Gold®” bracelets, gold pins or other awareness items items. Our awareness shirts and items support ACCO’s programs and help us to provide free resources to families facing a childhood cancer diagnosis. Many of our shirts feature thousands of names that each represent a precious life and an entire community of people whose lives have been forever changed by childhood cancer. Click Here to see our 2016 Go Gold Awareness shirts (only available until September 12th) or Here for other awareness items.

Host an Event: ACCO offers many ways for individuals, corporations, schools and any other groups to host ACCO signature events to help support children and teens with cancer. We help organize your event, provide prizes and event materials, a website portal for groups, team and/or individuals to collect donations, and depending on the size of your event, provide marketing options. Click Here to learn how to get involved.

Supporting the STAR Act: What could be a better way to kick off September as Childhood Cancer Awareness Month than adding your support to the most comprehensive childhood cancer bill ever in US legislative history: the STAR Act! We need your help reminding Chairman Upton that this bill is important and that it deserves a hearing! Click Here to learn more about how you can help.

There are so many wonderful and creative ways to help raise awareness about Childhood Cancer, and we are honored to help you however we can. If you would like to learn more or discuss your ideas about raising awareness this month, please feel free to Contact Us Here. We can’t wait to help you Go Gold® for kids with cancer this September! Please take a moment to view all of the many options on our website.

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, the ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

ACCO_Chicago061516-3172With September—Childhood Cancer Awareness Month—just around the corner, we would like to take a few minutes to thank Anna and her family for taking the time to be part of our awareness activities in Chicago in mid-June. After a year of treatment for T-Cell Acute Lymphoblastic Leukemia, Anna is currently in the middle of aggressive chemotherapy designed to eliminate the last remaining cancer cells in her blood so she can move to the next phase of treatment: maintenance. Yet despite a prolonged hospital stay as Anna’s young body continues to struggle with the effects of the aggressive treatment, she was excited to participate in this important awareness campaign, to act as an ambassador for all the many childhood cancer warriors facing this terrible disease. It was truly an honor to meet her!

Anna’s Story

September of 2015, Anna was a typical 5 year-old starting kindergarten. However, only three weeks into the school year, this typically energetic and sassy redhead was becoming more and more lethargic, with fevers that wouldn’t stay away and bruises that kept coming back. After bringing her to urgent care on a Sunday afternoon, Anna’s parents knew something just wasn’t right and took her to the ER for a follow-up. While the sense of urgency was ultimately correct and somewhat expected, the diagnosis certainly wasn’t. Anna’s parents were told she likely had leukemia and was very, very sick. She was sent directly to the PICU where she spent the next several days and additional days in the pediatric ward where she was ultimately diagnosed with T-Cell Acute Lymphoblastic Leukemia, a sub-type of leukemia, which is a cancer of the blood and bone marrow.

Cancer Diagnosis

In the early days after diagnosis, Anna’s family members were inundated with a whirlwind of information amidst their concern around their little girl’s life. Within the first couple of days, Anna had surgery to place a port, decisions needed to be made about whether or not to treat her as part of a clinical study, and instant education needed to happen around a plethora of unfamiliar vocabulary and options for a very overwhelmed and frightened set of parents. Both Anna and her concerned older sister were thrown into a scary place as a patient and a sibling that involved serious yet child-friendly dialogues around cancer and what it would mean for everyone involved.  And of course Anna herself had to adapt to being poked and prodded endlessly, forced to take many awful medicines to bring her body into a safe place for early and aggressive treatment, all the while trying to understand as a kindergartner why all of this was so important and necessary.

T-Cell Acute Lymphoblastic Leukemia Treatment

ACCO_Chicago061516-3154There was an exceptionally fearful time in the early weeks of treatment where a suspected life-threatening turn of events required a rapid response from the emergency staff on the pediatric floor, and Anna’s parents were told to prepare for the worst. Luckily, it was determined that it was a lesser threat of kidney stones, but that led into very painful days for Anna to pass the stones, all while enduring chemotherapy and being on a low sodium diet during a phase of treatment where the side effects drive patients to crave salty food. All in all, it was one of the most miserable and terrifying phases of her they had experienced to date.

In spite of this set of conditions, Anna showed a tremendous will of spirit. She loved her new friends in the hospital from Child Life, the nursing staff, and the hospital volunteers. She thought the toys and playtime to explain the medical routines were a treat, not a chore.  Her joy in these trying times helped to lift her family through this seismic shift in their lives, especially through many of the logistical challenges. The daily life activities of Anna’s sister’s school attendance, homework, sports, pet care, household chores, etc. all still needed to happen while one parent remained in the hospital at all times.

As time passed and Anna’s treatment shifted to primarily weekly outpatient visits with planned inpatient stays for longer chemotherapy sessions, her road map was anything but certain. Several times she spent multiple days in the hospital due to fevers or side effects from treatment. Lumbar punctures, chemotherapy, and transfusions become commonplace, which no child nor family should have to come to know. However, at least the plan was in place, and Anna was responding to treatment. By January she was declared to be in remission…one step closer to the ultimate goal of curing Anna of cancer entirely.

Anna Now

ACCO_Chicago061516-3345Anna is currently still in treatment and close to reaching the beginning of the next phase…maintenance, where she will continue aggressive support of staying in remission for at least several months beyond that. The calendar is not yet completely certain, as it is completely dependent on how the days and weeks of treatment pass in the meanwhile. The chemotherapy has been brutal for Anna, and she has sometimes had delays between treatments due to the effects and how she recovers from each session. However, Anna is a fighter, and she is looking forward to returning to school this year, in spite of the ongoing risks and having to be isolated or excluded if her body has a tough time with ongoing treatment. Her family continues to try to creatively keep Anna focused positively on fun in spite of the hard work. Fighting as a family toward beating cancer has brought them closer together and helped them to be more inspired to live life with meaning and joy in spite of the dark and scary days in between.

To submit a Gold Ribbon Hero’s story, please Click Here

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

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SHARE YOUR STORY WITH THE WORLD 
HOW DID CHILDHOOD CANCER CHANGE YOUR LIFE?

For those of us who have heard the words “your child or teen has cancer,” we know this is not just something that happens in the United States. It happens to families across the globe, everyday! In fact, there are more than 300,000 children under the age of 19 diagnosed around the world each year. 80% of these children are from low-middle income countries where access to treatment and cure are too often beyond reach. 
We also know that as a united front, from every country together, we have the opportunity to change the impact of this devastating diagnosis. The World Health Organization (WHO) is inviting families to share our stories to raise awareness of childhood cancer as a unique and significant type of Noncommunicable Disease (NCD). We ask you to share your story and be a voice for those who have none! 
To Share Your Story Click Here or the Button Below:
This is an opportunity to share YOUR personal story of approximately 400 words about how childhood cancer impacted your life; the measures taken to treat the child in your country; the actions of stakeholders that were helpful; as well as your perspective on how government can enable support to improve childhood cancer outcomes. Short stories can be written from the perspective of the patient, survivor, parent or healthcare worker. We are looking to highlight the childhood cancer challenges that exist and the great potential to overcome them.

*Note: We would like to include high quality photos to show the child or teen who is featured in the story, as well as tell the story through the image. We ask that your NCD story and photo please be emailed to:

ncds-and-me@who.int and to us here at ACCO (copy and paste email) at: rhoffman@acco.org.

 

Thanks in advance for your timely response to this enormous opportunity.
Please feel free to contact me if you have any questions at: rhoffman@acco.org
Thank You,
Ruth I Hoffman, MPH, Executive Director of ACCO and
Vice Chair of Childhood Cancer International

An Introduction to Childhood Cancer

IMG_2109Cancer is a general term given to diseases caused by the uncontrolled growth of abnormal cells.  Awareness of and attention to adult cancers has grown exponentially over the past decades, but unfortunately, there is much less awareness of and knowledge about childhood cancer.  Did you know that 1 out of every 285 children will be diagnosed with childhood cancer this year alone?  Or that more than 1,200 children die from childhood cancer ever year?  At the American Childhood Cancer Organization (ACCO), our mission is to educate and build awareness about this devastating disease and the terrible toll it takes on children and their families.  So perhaps the best place to start is with a few simple facts about childhood cancer…

The Most Common Types of Childhood Cancer

Unlike adult cancers, childhood cancers are not closely linked to lifestyle choices or environmental exposure, nor are there screening mechanisms to enable early detection.  Often, childhood cancer is not detected or diagnosed until it begins causing noticeable symptoms.  The most common types of childhood cancer are:

  • Leukemia: Leukemias involve cancers of the bone marrow and blood, and constitute about 30% of all childhood cancers. The two types we hear about most are acute lymphocytic leukemia (ALL) and acute myelogenous leukemia (AML), both of which can grow quickly and require immediate treatment.
  • Brain and central nervous system tumors: Brain tumors (and less commonly spinal cord tumors) make up about a quarter (26%) of all childhood cancers. There are a variety of different types of brain tumors, classified by where the tumor started, such as gliomas, astrocytomas, and primitive neuroectodermal tumors.  Treatment and prognosis depends heavily on the exact type and location of the tumor.
  • Lymphoma: Lymphoma begins in the immune system, and is likely to be found the lymph nodes, tonsils, thymus, or spleen. Hodgkin lymphoma accounts for around 3% of childhood cancer and is most common in young adults; non-Hodgkin lymphoma accounts for around 5% of childhood cancers and occurs in younger children (but is rare in children under 3).  Lymphoma is generally a rapidly-growing form of cancer and requires immediate treatment.
  • Neuroblastoma: Found primarily in infants and very young children, neuroblastomas constitute about 6% of childhood cancers. Although neuroblastoma can start anywhere, it is most commonly found in the abdomen.
  • Wilms tumor: About 5% of childhood cancers, Wilms tumor starts in one kidney (it can occur in both kidneys, but this is rare). It is most common in children between the ages of 3-4, and uncommon in children older than 6.
  • Rhabdomyosarcoma: The most commonly occurring soft tissue sarcoma in children, this cancer grows in cells that develop into skeletal muscles and can be found anywhere in the body. It accounts for approximately 3% of childhood cancers.
  • Bone cancers: Primary bone cancers start in the bones, and are distinguished from metastatic bone cancer, which is a cancer that has started elsewhere but spread into the bone. Primary bone cancers make up about 3% of childhood cancer; the most common types of bone cancer in children are osteosarcoma and Ewing sarcoma.
  • Retinoblastoma: This cancer starts in the eye and is most common in children under the age of two (it is rarely found in children older than 6). It constitutes about 2% of childhood cancers.

Why Is Raising Awareness About Childhood Cancer Important?

Although still considered to be “rare” by some, the fact is that childhood cancer is the second leading cause of death of children under the age of 15 after accidental deaths, and it seems like most people know at least someone in their school or their town who has been personally affected by childhood cancer.  And while rates of childhood cancer are increasing, research into the development of new, less toxic treatment options for childhood cancer is not keeping pace; of the more than 100 new cancer drugs approved by the FDA since 1990, only two were developed specifically to treat childhood cancer.  Many forms of childhood cancer are now considered “treatable”, with long-term survivor rates above 80 or even 90%, some forms of childhood cancer still have extremely high mortality rates and most survivors are left with long-term health problems as a result of their cancer treatment.

About the American Childhood Cancer Organization

The American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship.  Internationally, the ACCO is the sole US member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world.  At the national level, the ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  At the grassroots level, the ACCO is focused on the children: developing and providing educational tools for families and learning resources for children in order to make the lives of children and their families easier and brighter during this difficult time.  Many of our resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer, on the ACCO in general, or to order resources for you or your child, please visit our website at www.acco.org.

For additional information on our resources or information on how to obtain our resources free of charge, please visit our website at www.acco.org.

For more information about the American Childhood Cancer Organization and how we can help, call 855.858.2226 or visit:

Want To Read American Childhood Cancer Organization On Your Phone? Click the NoteStream logo: NoteStream

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