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.
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!
Meet Frank “Sal,” a 16-year-old sports enthusiast and Lumineers fan. At the age of 14, Sal was diagnosed with germ cell testicular cancer and is currently in remission!
Sal was complaining of a swollen testicle after a bike accident and his parents took him into the doctor’s to check it out. Instead, they were sent straight to the emergency room after the doctor suspected it might be ruptured. Within ten minutes, the doctor informed Sal and his parents that it was testicular cancer. Initial impressions were scared and upset but Sal was determined to beat it.
His treatment was accelerated by receiving a total of 28 chemotherapy treatments. The treatments were rigorous; both in and outpatient and once the initial 24 treatments were complete, they were sent for four additional outpatient treatments. “He went through treatments like a champ, now he can help other children to see that they can get back to normal,” his mother, Elizabeth said. During his journey, Sal had abdominal surgery to remove a mass from his kidney where his cancer had spread.
Elizabeth remembers, “I was diagnosed two years ago with breast cancer and I am currently 1.5 years in remission. I thought I handled my diagnosis and treatments like a pro until I watched my son go through this. He blew me away. He never complained, sat in the hospital for six days in a row, 24 treatments over seven weeks and still smiled for pictures. When he lost his hair, I cried, not him. He has been unbelievably strong through this.”
During treatment, Sal was not able to join the football team, however he has joined the track team and already earned second place in a conference for his long jump. According to his mom, “Frank is the most giving kid, he plans to advocate that you can make it and do bigger and greater things even when you feel like rock bottom.”
Meet Mady, a courageous 13-year-old dancer with a love of fashion and makeup. ACCO first got in touch with Mady’s mom, Ashley in February of 2019 after Mady met Randy Fenoli at Kleinfeld in New York City. We’ve been following Mady’s story ever since.
This month Mady relapsed and this time it was evident in her spine. She is beginning cycles of radiation in early February in New York.
Mady was first diagnosed with neuroblastoma at the age of 8 years old. According to Ashley, “Mady was playing softball and rounded a base. She hurt her ankle which caused pain throughout her body. I knew something was wrong but didn’t know the extent.”
“It was the scariest day of our lives. The doctor sat us down and said her gut feeling was right – they had found a tumor on Mady’s left adrenal gland.” The doctor ended up doing more scans and discovered neuroblastoma. Mady was scared and confused and of course, Ashley was terrified of the outcome.
Treatment started shortly after with several rounds of chemo and radiation which made Mady extremely sick. She was devastated when she lost her hair but she kept fighting. Later, it was discovered that Mady’s body was resistant to the chemo so they quickly switched to two different immunotherapy treatment and two mibg radiation therapy treatments. Mady has had two ports placed, had her left adrenal gland removed and endured biopsies of skull lesions.
After two years of treatment, the cancer went dormant but relapsed in January of 2018. In March of 2018, Mady and her mom traveled to New York twice monthly to begin a trial treatment which cleared her of disease after 13 rounds of immunotherapy. In August of 2019, she had her first set of clear bone scans in almost four years.
Mady’s attitude has been determined throughout treatment saying “it’s okay, I’m going to beat it!” From day one she had faith that she was going to beat the disease and has persevered when nothing was working. You can follow Mady’s story here: https://www.facebook.com/groups/1038894766152004/
Please help ACCO send well wishes to Mady and her family by commenting on this post!
ACCO provides information, resources, support, awareness and advocacy to families who are affected by childhood cancer. Donate today to help the littlest warriors.
UPDATE: May 22, 2023, ACCO is sad to announce that on May 19, 2023, Mady passed away while surrounded by her family.
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) announcement 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.
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.
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. www.acco.org.
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.www.childhoodcancerinternational.org
FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International. firstname.lastname@example.org; 202-262-9949.