Wear Your 2017 ICCD Shirts

Posted on February 14, 2017 by ACCO

Help us honor the hundreds of thousands of children affected by childhood cancer around the world.

Wear your ICCD Awareness T-Shirt today!
Share photos of yourself and your family wearing your t-shirts with us!
- Share at: media@acco.org. Or by posting them on our Facebook Page feed, or through a private message.

Every year, approximately 300,000 children and teens will be diagnosed with childhood cancer around the world. Approximately 300,000 children every year—in every community, in every country, around the world—will have their lives changed forever by this devastating disease. And we believe this grim statistic is only the tip of the iceberg. Many more cases of childhood cancer in low- and middle-income countries go undiagnosed due to lack of access to adequate diagnostic tools and even basic health care. Moreover, because of the drastic inequity in basic health care, as well as specialized cancer treatment options, children in low- and middle-income countries are significantly more likely to die from childhood cancer than children in high-income countries.

We can change these grim facts, but we need your help! Today, on International Childhood Cancer Day—Wednesday, February 15, 2017—we honor all the children whose lives have been turned upside by this devastating disease by celebrating the courage, bravery and strength of childhood cancer warriors the world over. The goal of this international advocacy day is come together and raise a unified voice about the increasing toll that this disease is taking on communities around the world, to work together to ensure that children in every country have equal access to safe and effective cancer treatment, and to show global, united support for children and families fighting this disease.

Show Your Support By Wearing Your ICCD Awareness T-Shirt Today!

We hope you will join us in honoring childhood cancer warriors today, International Childhood Cancer Day, by proudly wearing your ICCD Awareness t-shirt. The 2017 t-shirt bears the names of 4,720 children who have fought or who are fighting childhood cancer. And please, share your support with us, so we can share it with the world! We encourage you to send us photos and video of yourself, your family, and your friends wearing your t-shirts. If you would like to share your photos and videos with us, please do so by emailing them to ACCO at: media@acco.org. Or by posting them on our Facebook Page feed, or through a private message.
Demand for this year’s t-shirt was overwhelming: this year alone, we processed orders for approximately 2,800 shirts, and nearly 34,000 Awareness Shirts have been ordered over the past three years! We are so excited about the success of this awareness campaign, and eagerly await your pictures and photos. If you ordered a shirt this year, or have one from a previous year’s campaign, please, we urge you to wear your shirt today, International Childhood Cancer Day, in solidarity to support these brave children and families. We thank you, in advance, for your help and support in this critical fight against childhood cancer.

Missed Submitting a Name and/or Ordering a Shirt?

Name submissions are already open for the next shirt campaign. Click Here or the button below to add the name to our next t-shirt campaign: 2017 September Childhood Cancer Awareness Month Shirt!

SUBMIT A NAME

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:

ACCO’s Work in Ethiopia

Posted on February 14, 2017 by ACCO

ACCO’s Restricted Donations to Fund Programs for Children with Cancer in Addis Ababa, Ethiopia

Today, on International Childhood Cancer Day, we join together with our partners in the childhood cancer community around the world to highlight the critical disparities in access to basic health care, as well as specialized cancer care for children facing a childhood cancer diagnosis in low- and middle-income countries (LMICs), and to advocate for “better access to care for children and adolescents with cancer everywhere.” It is indeed, a difficult reality for parents of children with cancer from high-income countries to recognize that children with cancer in LMICs are far more likely to die from their disease. In fact, in high-income countries, survival rates for the most curable forms of childhood cancer can be as high as 85% while survival rates for those same types of cancer are on average as low as 10% in low-income countries.

ACCO is taking real steps to ensure that more children in low-income countries have access to the specialized cancer care they need to fight childhood cancer and to ensure that their families have the support they need to help their child fight—and hopefully win—the battle against childhood cancer. Through our role as member organization of Childhood Cancer International and associated collaborations with the World Health Organization (WHO), ACCO was invited to participate in a workshop assessing the critical healthcare needs for children being treated for cancer in Ethiopia. Working alongside the WHO, Childhood Cancer International (CCI), SIOP and the Aslan Foundation, work is being done to train fellows in pediatric oncology, to increase access to essential cancer medicines in Ethiopia and to build sustainable infrastructures. As a parent-led organization, ACCO was particularly passionate about providing support to TAPCCO—the parent organization working with children being treated for cancer at the Tikur Anbessa (translated as Black Lion) Hospital in Addis Ababa, Ethiopia. Malnutrition was identified as a contributing cause of mortality of children diagnosed with cancer in Ethiopia, and psychosocial support was identified as essential for parent’s understanding of treatment, consequences of abandonment of treatment as well as management of pain. ACCO agreed to seek “restricted funding” to provide support for these essential programs donated to ACCO from people and/or organizations who have specifically designated their support for this program.

ACCO’s restricted funding for 2017 to date will provide the following programs and services for children with cancer being treated at Black Lion Hospital in Addis Ababa.

The annual salary of the pediatric oncology psychologist
Transportation for the psychologist to attend specialized training in palliative care and nutrition
The annual salary of a social worker
Transportation for the social worker at attend training in palliative care and nutrition
$2,000 towards the $5,400 needed to provide lunch for all of the in-patient oncology children for a year, focusing on nutritional supplements of beans, meat and fruit

We hope to raise the additional $3,400 needed to finish paying for lunch (nutritional supplement of fruit, beans and meat) for in-patient oncology children for a year, and gladly welcome donations to this program for this purpose! To make a restricted donation, please Click Here or the button below:

HELP CHILDREN FIGHTING CANCER AROUND THE WORLD»

Who This Program Helps!

This amazing program helps to ensure that children and their families who might otherwise not be able to obtain treatment for cancer have access to appropriate treatment at Black Lion Hospital; as you will see from the stories below, many of these families could not afford even the cost of travel to Addis Ababa or the cost to stay in the city for the duration of treatment, never mind covering the cost of the treatment itself. We invite you to read the personal stories of three young people whose lives were changed not only by their cancer diagnosis but also by the funding provided by donors who cared to make a difference in the lives of children who had so little.

About American Childhood Cancer Organization (ACCO)

ICCD 2017 Infographics

Posted on February 14, 2017 by ACCO

“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.

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:

CHILDHOOD CANCER INFOGRAPHIC »

The 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

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:

2017 IARC Report

Posted on February 14, 2017 by ACCO

The American Childhood Cancer Organization (ACCO) is very pleased to announce the release of a major new online report on childhood cancer by the International Agency for Research on Cancer (IARC). This new report previews a comprehensive and wide-reaching survey of the occurrence of childhood cancer in 80 countries world-wide which will give us a critical new understanding into the prevalence of this disease across the world. The release of this important report on International Childhood Cancer Day 2017 (ICCD) will help us and our partner organizations around the world continue to raise awareness about childhood cancer and the inequities of treatment options, specialized care, and even basic health care, facing children in many parts of the world.

Past research efforts have begun to show that occurrences of childhood cancer are increasing across the globe and that childhood cancer is threatening to overtake infectious disease as the primary disease-related cause of death among children worldwide. Moreover, in low- and middle-income countries where access to medical care for children and families is extremely limited, we believe that childhood cancer is significantly under-diagnosed and under-reported. We welcome the insight this new report provides into this critical issue, because only with accurate, reliable information can we begin to ensure that children and their families around the world gain access to critical medications and medical care necessary to diagnose and treat children with cancer.

Every year, International Childhood Cancer Day gives us the opportunity to stand together with our international partners to raise awareness about the devastating toll this disease takes on children and families around the world, and to highlight the appalling inequities of treatment and care suffered by children living in low- and middle-income countries. In the words of Dr. Christopher Wild, Director of IARC, “A child with cancer casts a long shadow on families, communities and society as a whole. I take this opportunity to highlight the need for effective cancer treatments to be available to all children, wherever they happen to live, but also for increased efforts from the international community to understand the occurrence, causes and ways to prevent this most devastating of conditions.”

We at ACCO believe that now is the time to highlight the critical need for better access to basic medical care, as well as diagnostic tools and treatment protocols, for children and families in under-developed countries. Only with research like this IARC report can we begin to address the “long shadow” that childhood cancer casts on families, communities, and our global society.

To read the online report in its entirety, please click here: http://iicc.iarc.fr/results/
About American Childhood Cancer Organization

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:

Healthcare Coverage

Posted on February 14, 2017 by ACCO

Share Your Story: the Critical Role of Patient Protection Provisions in Healthcare Coverage

Even as we speak, the future of the Affordable Care Act (sometimes called “Obamacare”) is being discussed and debated by politicians on both sides of the aisle in Washington. Yet during these debates, it is far too easy for policy-makers to focus on dry facts and ideological grandstanding and forget that there are real families whose lives will be dramatically altered by their decisions. So it is our goal to make sure they don’t forget the faces, to bring those faces—your faces—to the forefront of this debate

We ask you to help us show the politicians in Washington the personal side of the importance of healthcare coverage by sharing your story, by sharing the face of your childhood cancer warrior. We ask you to tell us how patient protection provisions in healthcare coverage have been a critical part of your family’s fight against childhood cancer. We ask you to work with us to remind the politicians that their decisions, whatever they may be, will have a very real, very human impact.

So how can you help?

Send us a photo of you and your family holding a sign with the words #CoverageMatters (please Click Here or the button below if you would like to print your sign)

CLICK HERE TO PRINT YOUR SIGN »

and/or

Tell us your story in a video, including the sign with #CoverageMatters

Please feel free to share your photo and/or video on our Facebook page using the #CoverageMatters hashtag, or send it to us via email at media@acco.org!

What do we mean by “Patient Protection Provisions”?

Simply put, Patient Protection Provisions are elements currently built into healthcare coverage to guarantee that more individuals have access to better health insurance. Some of the most well-known of the Patient Protection Provisions include:

Preventing insurers from denying coverage (including retroactively rescinding coverage) to children and adults with preexisting health conditions, or charging more for coverage.
Prohibiting lifetime caps or annual limits on healthcare coverage.
Enabling unmarried children to remain on their parents’ health insurance until the age of 26.

You have told us that these provisions matter to you! A recent ACCO survey indicated that:

9 out of 10 respondents believe the prohibition on lifetime and annual caps on coverage is important;
9 out of 10 respondents that the prohibition on preventing denial of coverage for preexisting health conditions is important.
7 out of 10 respondents believe that it is important for dependent children to receive healthcare coverage until the age of 26;

Moreover, the survey clearly indicates just how expensive childhood cancer treatment is, even with these provisions in place: 24% of respondents noted that out-of-pocket costs of cancer treatment was between $5,000 and $10,000, while 18% stated that they had incurred more than $10,000 in out-of-pocket expenses. Moreover, nearly 40% of respondents indicated that their family incurred “considerable” debt as a result of their child/teen’s cancer diagnosis. We can only imagine what these percentages might have been if healthcare coverage did not include these critical patient protection provisions.

To see the results of the survey, scroll down. This survey was shared on 2/8/2017 and had over 500 responses in four days.

#CoverageMatters

Health care coverage matters! You know it, we know it, and now we need to make sure the politicians in Washington know it. So please, send us your photo, send us your story on how these provisions have impacted your family, and help us remind Washington that #CoverageMatters!

About American Childhood Cancer Organization

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:

ICCD 2017

Posted on February 14, 2017 by ACCO

International Childhood Cancer Day

“We Are One!” On Wednesday, February 15, 2017, the world will come together to honor 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 on 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.

Childhood Cancer Global Increase

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 in low- and middle-income countries are more likely to die from childhood cancer than children in high-income countries.

ICCD Goal

The goal of International Childhood Cancer Day is to bring awareness to this stark reality 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.

See what the World Health Organization (WHO) has to say about ICCD, Click Here.

About American Childhood Cancer Organization

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:

Give Hope and Donate to the ACCO Today!

Posted on December 27, 2016 by ACCO

Give hope this holiday season and donate to the American Childhood Cancer Organization. Your tax deductible donation will help a family facing a childhood cancer diagnosis.

Click Here or the button below to donate today!

Donate Online »

Donate By Mail »

Dear ACCO Family,

The American Childhood Cancer Organization (ACCO) stands proudly at the forefront of the fight against childhood cancer, continuing our efforts to bring comfort and support to children with cancer and their families throughout their journey.

Celebrate with us!
This year through social media we connected more than 126,000 individual family members, survivors, and supporters with our ever-expanding ACCO family. In the past two years, we were able to deliver more than 77,000 individual items free of charge across the United States! Our 2016 Go Gold for Kids with Cancer® t-shirt campaigns raised more awareness than we could have ever imagined, with more than 14,500 shirts, honoring the names of 9,496 children who have suffered from childhood cancer, proudly bringing awareness of childhood cancer right into the heart of your local communities.

Support families with us!

Moms like Miriam Matz and Wendy Brown reassure us that our organization must keep fighting childhood cancer alongside families all over the United States.

“My 6 year old LOVES the book Chemo, Craziness and Comfort and has been reading it and re-reading it since diagnosis when she was still 5. It is just perfect for her…” – Eliana’s mom

“I was a desperate FOSTER mom looking for answers and support – now that child is my adopted child, and I still need answers and support. ACCO was one of the FIRST resources I found, and continues to be my ‘go to’ place for sharing with others.” Asher’s mom

Learn more about us!
Advocacy has been at the heart of our mission since our founding in 1970! This past year ACCO has continued to raise our collective voice in supporting the passing of the STAR (Survivorship, Treatment, Access and Research) ACT. This bill will ensure increased funding for childhood cancer research so that all children diagnosed have hope for a cure. ACCO knows that childhood cancer doesn’t end at America’s borders. Children around the world suffer from this disease but sadly less than 10% of those children diagnosed in low income countries survive. ACCO is proud to be the U.S. organization represented on Childhood Cancer International and work alongside the World Health Organization to reduce childhood cancer mortality for all children diagnosed with cancer regardless of where they live in the world.

Grow with us!
The demand for our awareness and community programs has rapidly grown, and in order to accommodate the many people partnering with us, we have added two new staff members to our team! This addition, along with a larger office space will allow our programs to continue expanding with the support of communities from coast to coast. Our mission won’t end until these learning resources and support are no longer needed. Only through the generosity of individuals, like you, can we continue to impact the lives of cancer’s littlest patients.

Thank you for your consideration to help raise awareness about childhood cancer and to help ACCO provide national and international advocacy, support, and essential learning resources to children and their families.

Grateful for your support…Because Kids Can’t Fight Cancer Alone®

Ruth I Hoffman MPH
Executive Director

After making your donation, forward this blog post or share on social media with your family and friends.
Go Gold® is a registered trademark of the American Childhood Cancer Organization.

About American Childhood Cancer Organization

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:

Rock Bottom Hope4Heroes PJammin Events

Posted on December 22, 2016 by ACCO

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”!

So 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.

We 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

https://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:

About American Childhood Cancer Organization

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:

Gold Ribbon Hero Creed’s Story

Posted on October 24, 2016 by ACCO

Creed’s Story

We would like to take a few minutes to share with you Creed’s story. Creed was diagnosed with Medulloblastoma just after his first birthday and courageously fought for his life through nearly a year of intense, difficult treatment. Unfortunately, the intensive treatment was unable to stop the spread of the cancer. Creed passed away on August 26, 2016, just one day before his second birthday. Yet Creed’s strength, his fighting spirit, and love of laughter live on: “Creed was the light of many of our lives. He inspired not only me, but so many others. He changed and impacted so many lives in just the short time he was given on this earth. After all, there is no footprint too small to leave an impact on this world that will last forever.”

The Diagnosis: Medulloblastoma

Medulloblastoma is a rapidly-growing tumor that develops in the cerebellum, the lower rear part of the brain responsible for critical functions such as balance and complex motor functions. Medulloblastoma is a sub-type of tumors known as PNETs, which develop in the immature cells of the central nervous system known as primitive neuroectodermal cells. Between 250 and 500 children in the United States are diagnosed with Medulloblastoma every year. Unfortunately, the disease is most aggressive in children, like Creed, who are diagnosed under the age of three.

Brain tumors in children are amongst the most difficult forms of cancer to treat due to their location in such a critical and highly sensitive area of the body. Standard treatment involves removing as much of the tumor as possible through surgery, then bombarding the cancer site with chemotherapy and radiation to kill any remaining cancer cells and prevent the formation and growth of new cancer cells. However, for the developing brain of the young child, the treatment can be nearly as devastating as the cancer itself with the potential for serious short- and long-term side effects. In fact, most oncologists will avoid or delay the use of radiation in children under the age of three because the risk of brain damage is so high. The options are gut-wrenching, and until more targeted, less toxic treatments can be developed, sadly limited.

The Gift of Laughter

Yet Creed faced the intense treatment—the many surgeries, the chemotherapy, and the pain—with smiles and laughter. “He could always manage to make everyone laugh no matter the circumstances.” And it is the memory of his handsome, smiling face and his infectious laughter that will carry his family through this very difficult time. “Creed is forever in our hearts. Until we meet again. Love and miss you, Creed baby.” Creed, and his family, are in our hearts as well. It is for them, and for all childhood cancer warriors, that we continue to dedicate ourselves to pushing for new, more effective, and less toxic treatments for all forms of childhood cancer.

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.

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:

Gold Ribbon Hero Camryn’s Story

Posted on October 17, 2016 by ACCO

Camryn’s Story: B-cell Acute lymphocytic leukemia

Camryn’s cancer journey began just a month after her second birthday, in April 2016, when she was diagnosed with B-cell Acute lymphocytic leukemia (ALL). The most commonly diagnosed form of childhood cancer in the United States, ALL is a fast-growing cancer that begins in the bone marrow and quickly spreads into the bloodstream. B-cell ALL forms in B lymphocytes which, when healthy, protect the body against bacteria and viruses by forming critical antibodies the body uses to fight infection and disease. Standard treatment for ALL is several rounds of chemotherapy to destroy as many cancer cells as possible, followed by about two years of maintenance chemo to flush out any remaining cancer cells as well as prevent the formation of new ones. As Camryn’s story shows, however, there is never anything “standard” about treating childhood cancer.

Delayed Intensification

“I feel like I live my life by numbers lately. Instead of days being days or even dates, our months and days are segmented into chunks of time. We live in phases and within these phases we have days.”

Camryn’s treatment plan involves several different stages of chemotherapy, varying in length and intensity. The first 30 days of chemotherapy, known as induction, is designed to kill as many cancer cells as possible, in order to achieve remission. Although remission is a positive step forward, it should not be confused with a cure. As Camryn’s mom notes, “…cancer is a nasty disease, it likes to hide in places that are tough to see and it’s pretty persistent and aggressive, that’s why we must continue with treatment.”

The next phase of treatment is consolidation, which is designed to continue reducing the number of cancer cells in the body while preventing the leukemia from developing resistance to the toxic drugs. In Camryn’s case, consolidation has been followed by a repeated induction phase, known as delayed intensification. Camryn is currently in the middle this, the most intense phase of her treatment plan. As Camryn’s family counts down these difficult days, they know they are scaling the most difficult peak in the cancer journey, and at the mid-way point in this 30-day period, they will be looking down the other side of the mountain, towards the finish line of two years of long-term maintenance chemotherapy.

Difficult Questions, Difficult Choices

“As Camryn said herself as she began ripping wires off and uncuffing herself… “I’m all done”. I know, baby, mama is too. I’m over all of this.”

Camryn’s oncology team is “cautiously optimistic” that her treatment will be ultimately be successful in its fight against childhood cancer. Yet the journey itself is difficult and dangerous; the toxic drugs required to destroy the cancer cells can have a disastrous impact on Camryn’s young body. Indeed, after induction, the cancer itself becomes less of a concern than the side effects created by the drugs: dangerous infections that Camryn’s body cannot fight because the cancer has destroyed her white blood cells; fluid retention, weight gain, and swelling that impact her ability to move and breathe; kidney damage and other organ damage if the toxic drugs cannot be flushed out of the system quickly enough. And the mood swings: from happy, calm two-year-old to an irritable, angry, and uncontrollable steroid-inflamed, “demon-possessed monster” in the blink of an eye.

How do you explain all of this to a two-year-old? How do you tell her that the chest x-ray, which requires her to be physically locked into position with her arms held up in the air, is necessary, even though it absolutely terrifies her? How do you manage the insomnia, the uncontrollable anger, and the insatiable hunger cravings brought about by the steroids? How can you reassure her that the needles, tests, and procedures are all designed to make her feel better later, even though they are making her feel awful now?

For Camryn’s family, these questions have been especially difficult to answer because of their own doubts about the long-term impact of Camryn’s treatment on her young body. The toxicity of the drugs and the visible short-term impact on her body are terrifying enough, but they know that the long-term side effects—particularly infertility and/or relapse with secondary cancer (especially acute myeloid leukemia, or AML)—are potentially worse. As Camryn’s mom so clearly states, “there’s no right answer” to any of these difficult questions. All they can do is cope with whatever each day throws at them, find strength in the support of family and friends, and believe that they are doing everything in their power to return Camryn to health and happiness.

More about Childhood Leukemia Cancers:

Learn More About the Different Types of Childhood Cancers:

Childhood Brain Tumor Cancer (Brain Stem Tumors)
Spinal Cord Tumor Cancer
Childhood Neuroblastoma Cancers
Childhood Hodgkin Lymphoma Cancers
Non-Hodgkin Lymphoma Cancers
Wilms tumor (Kidney Tumors)
Rhabdomyosarcoma
Retinoblastoma
Bone cancer (including osteosarcoma and Ewing sarcoma)
Leukemia Cancers: Acute lymphocytic (lymphoblastic) leukemia (ALL) Acute myelogenous leukemia (AML); Juvenile myelomonocytic leukemia (JMML)
Hepatoblastoma (Liver Cancer)
Rhabdoid Tumors

About the American Childhood Cancer Organization

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