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Gold Ribbon Hero: Haven

Tag Archives: Cancer

grh haven copy

Meet Haven, a brave cancer warrior that was taken too soon. Haven fought a long battle with B-cell acute lymphoblastic leukemia (ALL) for almost five years with a smile on her face and concern for people around her. 

At just nine years old, Haven was experiencing fevers and swollen lymph nodes. On April 24, 2015, she was diagnosed with B-cell ALL. “We went to get blood work to see why she was having fevers and we were in utter shock hearing the word ‘leukemia,’ ” remembers Haven’s mother, Magan. Haven’s parents were fearful and heartbroken but Haven remained positive with a “let’s beat this” attitude.

Treatment started almost instantly and Haven received two and a half years of chemotherapy. She had a port placement and removal as well as a hickman placement and removal. Haven went into remission for 15 months and then relapsed again. This time, treatment consisted of four months of chemotherapy and a bone marrow transplant which resulted in Haven going back into remission for seven months. On December 20, 2019 Haven relapsed and sadly passed away on January 7, 2020. 

Haven was very strong. When she relapsed the first time, she told her mom that ‘at least it was her and not someone who couldn’t handle it.’ One of Haven’s favorite things to do was cooking and she always wanted to feed everyone. Haven asked that her family help feed other families on the oncology floor during the holidays in honor and in memory of her.  “Even on her deathbed, she was still worried about everyone else and was not scared. She was at peace knowing that her life would soon come to an end,” Magan said. Days before Haven passed she said that she was grateful that she had received the bone marrow transplant since researchers could learn from her story. 

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About American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in 1970 by parents of children and adolescents diagnosed with cancer. As the nation’s oldest and largest grassroots organization dedicated to childhood cancer, ACCO is committed to shaping policy, supporting research, raising awareness, and providing free educational resources to kids with cancer, survivors, and their families. Additionally, ACCO is the sole U.S. member of Childhood Cancer International (CCI) and has helped support more than half a million families over the past 50 years. Help make childhood cancer a national health priority because kids can’t fight cancer alone®

For more information about how ACCO can help your family, call 855.858.2226 or visit:


Meet Naomi, a kind-hearted little girl who loves unicorns and helping people. Naomi is currently on treatment battling Pinealoblastoma, a subtype of a brain tumor and spinal cord tumor. grh naomi

Red flags started to arise after Naomi collapsed in school; she didn’t even know her name. Naomi visited the emergency room several times before doctors finally took a closer look. They found a mass in her pineal region and immediately sent her to Children’s in Cincinnati. On October 3rd, Naomi and her parents were given the diagnosis of stage four pineoblastoma with metastasis in the spine.  “We got the MRI results and they took us in a big room. It took my breath. I couldn’t believe it. All I wanted to do was go grab her and hold her. We were lost” her father, Kenneth, remembers.

The treatment plan for Naomi is rigorous consisting of 30 proton radiation treatments and six months of chemotherapy. October of 2019, Naomi had four brain surgeries and doctors told the family that if they got all of the cancer and it comes back, there is nothing they can do.

Naomi is a kind soul. While in the hospital, she bagged up her Halloween candy and passed it to the children that didn’t get to go trick or treating. She is working to start a teddy bear drive to donate to the hospital. She is currently undergoing chemotherapy for the next few months. Please help ACCO by sending her well wishes!

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grh AdrianMeet Adrian, a shark and travel enthusiast that was diagnosed with Pituitary Germinoma at the age of 16. 

Adrian’s symptoms started in August 2017 when he was complaining of frequent headaches accompanied by nausea and vomiting. In October 2017, an MRI was taken of his brain revealing a mass in his pituitary region which compressed his left optic nerve.

On November 10, 2017, Adrian underwent his first brain surgery to remove the top portion of his tumor however the rest of the mass was not able to be removed. The top portion of the tumor was sent to the lab revealing Intracranial Pituitary Germinoma.  Just 12 days later, Adrian was sent back into brain surgery to remove built up fluid on his brain.

Adrian’s mom, Veronica said “we were already devastated seeing him come out of a brain surgery. We were so nervous, but once we heard it was actually cancer, I cannot put it into words the devastation, fear, anger and a million feelings/thoughts/emotions we experienced. As a parent, it is the most devastating thing to hear that your child has cancer.”

Adrian began his first round of chemotherapy leaving him very weak. Three weeks later, he started his second round of therapy. In total, Adrian completed four rounds of chemotherapy and followed with 21 days of radiation.

Through all of the treatments, Adrian did not complain about his pain or struggles. Cancer gave Adrian a new outlook on life and his hope is that all affected with cancer around the world are cured of cancer and can live fulfilling and happy lives.

Adrian was awarded two separate trips which ultimately brought the family closer together in their journey. On his wish trip, Adrian was able to go shark diving, cave diving, and swim with the dolphins. “It allowed us to live in the moment with one another, something that we hadn’t really done because we would always anticipate every appointment, every chemo cycle, every surgery. It was something we were always anticipating, whether it was his health, we were always worrying. It just gave us just that hope to look forward to the future and not think about those things,” explained Veronica.edit2

Adrian is now 18, and thriving as a survivor.  He is currently being monitored by oncology every three months and is on hormone replacement therapy for his pituitary gland. Please join us in sending well wishes to Adrian and his family!

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FOR IMMEDIATE RELEASE – September 28, 2018 – Washington, D.C. – The American Childhood Cancer Organization (ACCO), the soleU.S. member of Childhood Cancer International (CCI) provided its overwhelming support today for the World Health Organization’s (WHO) 0announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.

Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.

Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.Screen Shot 2018-09-26 at 3.15.41 PM

How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, ACCO’s Chief Executive Officer, and President of Childhood Cancer International. “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little yet are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world.” Ms. Hoffman will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.

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  • Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;
  • Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship
    care inclusive of the needs of childhood cancers;
  • Improve access to affordable essential child cancer medicines and technologies;
  • Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;
  • Prioritize cancer as a child health priority and increase available funding at the national and global levels.

This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.

Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come.

*Some Stakeholders include: The International Society of Pediatric Oncology (SIOP), Intenational society of pediatric oncologists, Union for International Cancer Control (UICC), International Atomic Energy Agency (IAEA), International Agency for Research on Cancer (IARC), Sick Kids Hospital of Toronto, Texas Children’s Hospital, World Bank, Pediatric Oncology Rally to Transform Access to Global Essentials (PORTAGE), Friends of Cancer Patients (FOCP), Chai Clinton Health Access Initiative (CCHAI), BIO Ventures for Global Health (BVGH), Pharmaceutical Industry, International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)


The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The U.S. largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States.

Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international develo
pment organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda.

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International.; 202-262-9949.

NYT Obama Moonshot CancerPresident Obama signed a presidential memorandum on Thursday creating a White House task force on cancer, the first step in what Vice President Joseph R. Biden Jr. has called a “moonshot” to cure the disease, administration officials said.

The president appointed Mr. Biden to lead the panel, which will include representatives from at least 13 government agencies. The group’s first meeting will be on Monday, officials said. Read more

The presidential memorandum signed Thursday says the task force’s goal is to double the rate of progress on treatment and prevention, a benchmark Biden first introduced earlier this month in tandem with Obama’s State of the Union address. The administration hasn’t said exactly how that will be measured, but laid out areas for potential progress including better use of federal dollars to support cancer prevention, treatment and early detection.

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.”

Grief quotes

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.

Inspire Support Group

Our online peer-to-peer support community offers members 24-hour access to other families who know what you are going through.  Focused specifically on childhood cancer-related issues, including bereavement, our Inspire community includes online discussion groups and personal journals and blogs, so you can read about others who understand what you are going through and share as much or as little of your story and your amazing child as you are comfortable with.

      • The Compassionate Friends ( 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 ( 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 ( 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 ( 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 ( 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


The Critical Importance of Good Nutrition for Children Fighting Childhood Cancer

cancer and nutritionEstablishing good eating habits and enticing children to eat nutritious, healthy foods is an issue with which all parents with young children struggle.  For parents of kids with cancer, however, the challenges are even greater, requiring untold levels of patience and creativity to overcome.  Why is good nutrition so important, yet so challenging, for kids with cancer?  The fact is that many forms of childhood cancer, as well as today’s cancer treatments involving chemotherapy and radiation therapy, negatively impact your child’s appetite, ability to eat, and ability to process and store nutrients appropriately, making a healthy diet even more difficult to maintain at a time when your child’s body needs the energy and nutrients from a healthy diet more than ever.

If your child is undergoing treatment for childhood cancer and is struggling to maintain a nutritious diet, or is losing or gaining significant amounts of weight, we encourage you to speak to your child’s oncology team immediately.  They can offer important information about your child’s dietary needs, and may recommend working with a registered dietitian who can offer more tailored guidance on the best foods for your child, given his or her unique medical circumstances.  It is also important to share your experiences with other parents going through, or who have gone through, a similar experience, as they may be able to offer helpful hints around making eating easier and more enjoyable for your child during this difficult time.

Why is eating right so important for kids with cancer?

All children require more calories per pound than adults to ensure proper and healthy growth and development.  The bodies of kids with cancer bear an additional burden, however: they may require even more calories to provide their small bodies with critical energy to fight the cancer and heal damaged tissues.  Helping your child take in sufficient calories, along with much-needed vitamins and minerals, will help your child’s body stay strong, make your child feel better, and ultimately give your child’s body the tools it needs to win the fight against cancer.  Specific benefits of a healthy diet include:

  • Greater tolerance for treatment and its negative side effects
  • Improves healing and recovery times after treatments
  • Boosts immune system to decrease the risk of infections during treatment
  • Helps maintain a healthy weight
  • Encourages and boosts your child’s ability to keep up with normal growth and development
  • Gives your child more strength and energy
  • Helps your child feel better overall

Why is eating so difficult for kids with cancer?

Unfortunately, cancer itself, as well as many treatment protocols, can make eating a challenging task for many children.  Both cancer and its treatment often undermine a child’s appetite, alter his or her tolerance for certain foods, and even change the way he or she processes nutrients.  Cancer treatments involving chemotherapy and radiation often bring unwelcome side effects impacting both food choices and the ability to eat, including: pain, constipation, diarrhea, nausea, vomiting, mouth and throat pain, mouth sores, dry mouth, and thick saliva, just to name a few.  Helping your child overcome these difficulties in order to eat—and eat well—requires flexibility, patience, and creativity!

What can I do to help my child eat better during cancer treatment?

There is no right answer to this question, because every child is unique, with unique medical requirements, different sensitivities and cravings, and fundamentally, still a child with particular likes and dislikes, just like every other child!  There is no right solution to this difficult problem, and many families find they need to try multiple approaches, multiple times over the course of their child’s treatment.

  • Understand the critical elements of a healthy diet and your child’s unique dietary needs.
  • Be flexible, and don’t feel limited by “traditional” eating habits.
  • Remember that your child may require foods that are not traditionally considered “healthy”.
  • Don’t be afraid to try new foods, and new tactics.
  • Making eating fun whenever possible.
  • Keep your child hydrated.
  • Don’t make eating into a battle.

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 our resources or information on how to obtain our resources free of charge, please visit our website at


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

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