Gold Ribbon Hero Anthony G.

“Reason this person is a Gold Ribbon Hero: Anthony fought Wilms Tumor like a champ. No matter what happened or what he was being put through he always had a smile on his face. Nothing brought him during this process.” – Christina G.

AS OF TODAY THE CHILDHOOD CANCER STAR ACT HIT 127 COSPONSORS!

“Cancer is a global health issue. By 2020, there will be 16 million new cases of of cancer worldwide. It must be noted that the incidence rate of cancer in children is on the rise. One in every 285 children will be diagnosed with cancer before their 20th birthday. The majority of cancer patients, especially children, are treated with toxic therapies that include chemotherapy and radiation. These types of toxic treatments can result in secondary cancers. In fact, 19% of people diagnosed with cancer, had cancer before. Clearly, there needs to be more research done into the causes of secondary cancers, as well as research to develop less toxic drugs to increase cures and reduce the incidence of secondary cancers.” – Caleb Hoffman (Brother of Childhood Cancer Survivor)

The American Childhood Cancer Organization is a proud member of the Alliance for Childhood Cancer, and with the help of the childhood cancer community, came together with the co-chairs of the Childhood Cancer Caucus to create the STAR Act (Survivorship, Treatment, Access & Research).

The Bill can be found by clicking these links: House Bill & Senate Bill.

To help with this initiative and to maintain the momentum, ACCO is asking:

That our families get behind this bill by asking their congressional representatives to sign on to the bill. Then please email us to let us know that you contacted your representatives in the House and Senate so that we can follow up with those offices. Click here to learn more…
For you to please support our ongoing work to raise awareness and to advocate on behalf of families of children with cancer across the U.S. by making a donation by clicking here or the button below.
Be sure to join the more than 80,000 followers on our Facebook Page to get involved in the conversation and stay connected.

ACCO wants to thank Senator Jack Reed (D-RI) as well as Congressman Mike McCaul (R-TX) and Chris Van Hollen (D-MD) for their sponsorship of this important legislation.

Also, early this morning, the House and Senate announced the details of the fiscal year 2016 omnibus appropriations legislation.

The National Institutes of Health will receive $32.084 billion, an increase of approximately $2 billion (6.6%). The agreement also includes $200,000,000 for the new Precision Medicine Initiative. The National Cancer Institute will receive $5,214,701,000, an increase of approximately $264.3 million (5.34%).

These increases are the largest in recent memory, and we are extremely grateful for the hope that these increased funding levels bring.

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

Gold Ribbon Hero Brooklyn T.

“Reason this person is a Gold Ribbon Hero: My hero is my 3 yr old granddaughter Brooklyn who in May was diagnosed with stage 4 Wilms tumor or nephroblastoma.
She has had 3 surgeries. One for her port & kidney biopsy. Then second, to remove her kidney, then lastly she developed complications from the kidney removal & had a bowel obstruction so they had to untwist her bowel.
That itself was a 20 day hospital stay.
She’s indured 8 rounds of radiation & 17 rounds of chemotherapy Along with numerous blood draws, pokes & scans
She always has a smile & meets no stranger. She loves her doggy Zoie & loves Elsa & everything from “Frozen” On December 8th she completed the last chemotherapy round & we are claiming that God has cleared her cancers & that she will get to “Ring the bell” in January. An awesome way to start our new year !!!!
https://www.facebook.com/BrooklynRTilley/” – Kristi M.

Gold Ribbon Hero Kena S.

“Reason this person is a Gold Ribbon Hero: Kena is a very stong little girl she has been though so much in in 2 years of her life but keeps right on smiling and going as strong as she can. Her parents find happiness though her and strength.” – Jennifer W.

Gold Ribbon Hero Lauren R.

“Reason this person is a Gold Ribbon Hero: Lauren was diagnosed with ALL Leukemia on April 29, 2015. She was just 2-1/2 at the time of diagnosis. Our sweet granddaughter is our HERO and a hero to everyone she knows! Through all her treatments, some way more difficult than other, she continues to smile and show us all what true strength is! She is a precious little girl. She has about 2 years of treatment to go but she is kicking each phase to the curb, one by one!!!” – Laura S.

Gold Ribbon Hero Alex S.

“Reason this person is a Gold Ribbon Hero: Straight A’s. Nothing was going to stop Alex from getting straight A’s-not even lymphoma. On July 22nd 2013 Alex went into CHOA for an adenoidectomy. When Dr. Sivi Bakthavachalam was performing his surgery, “something did not look right” and he found that it was cancer. In utter shock and disbelief we took Alex home until the diagnosis was confirmed. Alex had lost his “Grammy” eight months before from cancer. He had never met his grandfather, great grandparents, or even his namesake because they died of cancer before Alex was born. So how does a parent tell their child that they too have cancer? In Alex’s mind cancer was a death sentence and, since he was a toddler, dying has always been his biggest fear.
We were called the next day once the diagnosis was confirmed and told to come to the hospital so Alex could be admitted. Now that we had a confirmed diagnosis, the Doctors were able to stage the progression of the cancer and insert a PICC line. A PICC line is a long, thin, hollow tube that a doctor or nurse puts into a vein above the bend of your elbow. This would deliver the chemo and other medicine. His chemo started immediately as his cancer was aggressive and too close to his brain. Thanks to Dr. Bakthavachalam, Alex’s cancer was caught early stage. His course of treatment required chemo directly into his spinal cord in addition to all the other chemo given through his PICC line. We will never forget the kindness, patience and warmth of Dr. Bergsagel, his oncologist, Karen, his Child Life Specialist, and those earth angels they call nurses. They didn’t just take care of Alex, they put their collective arms around our whole family and they were (and still are) the glue that keeps us together.
Imagine, just for a moment, being 15, getting ready to start 10th grade nearly bald and with tubes coming out of your arm knowing you have cancer. Knowing that “triple taps” into his spine, weekly blood draws and chemo were going to be how he spent what should have been one of the most exciting times of his life.
He did not complain and he did not stay home from school. He held his fuzzy head high and went about living his life. “We just have to keep moving forward Mom. We can’t change the past or what’s happening now. We just have to keep moving forward.” This was the wisdom coming from my 15 year old.
Alex studied while hospitalized even when they came in to change his chemo bags. He just kept moving forward and he got his straight A’s.” – Carvotta

Gold Ribbon Hero Gabriel G.

“Reason this person is a Gold Ribbon Hero: Todos los que tuvimos el gusto de conocerte lloramos tu partida pero nos quedamos con el grato recuerdo de los buenos momentos que pasamos juntos y nos diste tanta alegría Nuestro Gaby siempre estaras en nuestros corazones. Te amamos muchisimo y Siempre te tenemos presente.” – Lester, Adriana y Josseling M.

Resources for Parents Who Have Lost a Child to Cancer

Coping with Grief: You Are Not Alone

For many years, the death of a child was something to be whispered about behind closed doors. Not knowing how to react or what words to say, family and friends would simply ignore the tragedy, perhaps offering a simple, quietly worded “I’m so sorry” and then quickly moving on to the next topic. Parents were told that “time heals all wounds” and “your child is in a better place,” but often didn’t feel comfortable sharing their grief, while even close friends and family worried about bringing up “painful memories.”

Yet any parent who has lost a child knows that time does not heal all wounds, and grief over the loss of a child to childhood cancer cannot and should not simply be swept under the rug or ignored until it passes. At the American Childhood Cancer Organization (ACCO), we believe that the lives of children who have lost their battle with childhood cancer should be celebrated. We believe that grieving parents and grieving families should be invited to share their grief openly, because while grieving for a lost child never ends, knowing that you are not alone, knowing that you can talk about your child and his or her fight, his or her beauty and strength, can make it just a little bit easier to cope with the difficult task of living.

If you have lost a child to childhood cancer, there are many, many resources available to help you cope with this difficult, challenging trauma. Whether through an online support community or a local grief support group, we encourage you to find a way to express your grief, share your story, and hear from others who are also attempting to cope with their grief. While by no means an exhaustive list, the following online resources can help you locate online groups, in-person communities, and grief centers dedicated to reminding you that you are not alone and that help is available.

- - The Compassionate Friends (http://www.compassionatefriends.org/home.aspx). Developed specifically to provide support to parents and family members who have suffered the loss of a child. Includes online support and resources, as well as local chapters and more than 660 meeting locations around the country.
  - Bereaved Parents of the USA (BP/USA) (org): A national, non-profit self-help organization dedicated to newly bereaved parents, grandparents, and siblings. Newsletters, articles, and brochures are available on-line; many states have local chapters with in-person support group meetings.
  - GriefNet (http://griefnet.org/): An Internet community of families, individuals, and children coping with grief. Members can access more than 50 email support groups, including many designed just for children.
  - The Centering Corporation (http://www.centering.org/): Offers resources, book, and magazines dedicated to helping cope with and manage grief. Includes a special listing of resources for loss of a child and loss of an infant.

Online and in-person resources geared specifically towards children coping with loss include:

- - The Dougy Center (dougy.org): A grieving center designed just for children and teens in Portland, Oregon, the Dougy Center also offers a wide variety of on-line resources, including books, DVDs, and activities, geared for children of all ages. Can make referrals to child-centered grief programs and support groups across the country.
  - Fernside (fernside.org): Online and phone-based support, as well as “how to help” booklets for parents and caregivers coping with the needs of grieving children.

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 and bereavement. 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 a bit easier and perhaps even brighter during this difficult time. Many of our resources are available free of charge for families coping with childhood cancer.

For additional information on resources available through the ACCO to help you cope with the loss of a child to childhood cancer, please visit our website at www.acco.org.

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.

Our library of free learning resources is growing! Thanks to our donors, this past year, we delivered more than 45,000 individual items free of charge across the US! We are especially excited about the introduction of ACCO’s Medical Play Therapy Kit-a learning tool designed to familiarize children with the medical devices used during their cancer treatments.

In the words of one parent, “My little Gabriel received his medical play kit yesterday! He loves it! What a brilliant idea to give our cancer kids back a sense of control, when there is so much they can’t control through treatment.” Another parent wrote to say, “For a patient like Liam, one of his biggest obstacles has always been overcoming the fear of his port being accessed. Thanks to your play kit Liam is finding fun and new ways of exploring the entire process of port activation. Thank you ACCO for our play kit.” We could ask for no better evidence of the importance of our organization than these powerful testimonials.

Awareness is building across the nation, and the world! The world sparkled with gold lights illuminating countless buildings during Childhood Cancer Awareness Month. Our 2015 Go Gold for Kids with Cancer® t-shirt campaigns raised more awareness than we could have ever imagined, with more than 12,012 shirts, honoring the names of 4,892 children who have suffered from childhood cancer, proudly bringing awareness of childhood cancer right into the heart of your local communities. Our new website gives families even easier access to our amazing wealth of learning resources, insightful blogs, and online support community, and through social media we connect more than 78,000 individual family members, survivors, and supporters with our ever-expanding ACCO family.

Our voice is spreading! In the US, ACCO participated in the writing of the Childhood Cancer STAR Act (Survivorship, Treatment Access & Research), which brings hope to tens of thousands of children on active treatment and to the hundreds of thousands of survivors through increased government appropriations. And our efforts do not end at our borders. Cancer remains the leading non-communicable disease-related cause of death of children in the world, primarily due to lack of access to quality healthcare and effective treatment options. I was proud to have served on the planning committee of the 68th World Health Assembly’s first side-event on childhood cancer, along with board member Dr. Greg Aune as invited speaker. ACCO will continue to represent the U.S. in global childhood cancer advocacy initiatives, including the WHO’s committee working towards a 2017 childhood cancer resolution. Our goal is to reduce global childhood cancer mortality 30% by 2030.

The ACCO is growing, thanks to you! To accommodate this growth, we will be looking for a larger space to allow us to more efficiently house and ship our resources across the country. 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.

Please consider a DONATION during this holiday season to further ACCO’s work towards reducing the burden of childhood cancer!

Because Kids Can’t Fight Cancer Alone®…our goal is to ensure that they don’t have to.