Tag Archives: American Childhood Cancer Organization
Meet Molly, a 19-year-old currently battling stage 3 anaplastic ependymoma. This warrior is currently a freshman at the University of North Carolina Greensboro studying musical theater.
A week before leaving for college, Molly experienced debilitating headaches. She went to the emergency room and was sent home with benadryl and a migraine diagnosis. After being asleep for 40 hours straight, Molly had an MRI which revealed a tennis ball size tumor. On August 15, 2019, Molly was diagnosed with stage 3 anaplastic ependymoma. That same day she was meant to move into her college dorm. Her mom said it was a complete shock, while Molly was just worried about going to school.
Treatment began almost immediately with a total resection of the brain to remove the tennis ball tumor followed by months of rehab and seven weeks of proton therapy. In January she had her first post op MRI and will keep having scans until officially cleared.
Music has been instrumental in Molly’s recovery. Three weeks after surgery, she danced for physical therapy. Within six weeks, she was on stage performing at a benefit. She wants people affected by cancer to “let yourself have bad days but know that you are strong enough to have good days too. Let people envelope you in love, because you aren’t doing this alone.”
Molly is an advocate for childhood cancer and has made some very exciting public appearances. She sang in front of 20,000 people at the Hockey Fights Cancer Night at the Blue Jackets and raised awareness at the Governor’s Mansion. In addition, she helps to raise awareness for pediatric cancer research by committing to ride a bike for 100 miles with her sisters.
Mighty Molly has been determined since day one of her diagnosis. She is a performer, singer and dreamer. She hopes to be on Broadway or a cruise ship to entertain the masses. Only six kids were chosen at UNCG for her musical theater and the spot was saved for her when she was unable to attend her first semester. Help ACCO send well wishes to Molly and her family.
Lilli loves to draw and paint, and is currently looking at colleges to pursue a career as a social worker.
Lilli was diagnosed with thyroid cancer at the age of 13 on September 13, 2013 and was understandably scared and upset. Shortly after her initial diagnosis, the family got a call saying it was much more serious saying they needed to pack their bags for a two week stay in the hospital. Lilli was diagnosed with stage 4 Burkitt’s lymphoma.
Treatment was intense for Lilli, she endured seven long months of chemotherapy and spinal taps. She had a port placed in her chest and shortly after had to have it removed due to a severe infection. “I faced many challenges during my treatment both physical and mental but during the whole time I never let myself get a bad attitude about any of it.
“Personally, as a 13-year-old girl, my biggest trouble was feeling confident without my hair. During that time, I did not feel pretty and the only pretty thing about myself was my hair; but, I overcame it and learned that I was beautiful no matter what” said Lilli.
On April 8, 2014 Lilli was cleared for remission and in June of 2019 she was declared out of remission! She is now 19 and attends the survivorship clinic at Pittsburgh Children’s Hospital for check ups at least once a year. Please join ACCO in sending Lilli well wishes in her future endeavors.
Lilli was featured in a Buzzfeed article about her journey. Read her firsthand story here: https://www.buzzfeed.com/lillianabailey99/childhood-cancer-gmzl5dpr8
Learn more about childhood cancer here: https://www.acco.org/types-of-childhood-cancer/
Donate to help kids like Lilli fight cancer: https://www.acco.org/donate/
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.”
As a new partner member of the Council of State Governments, ACCO’s #WhyNotKids State Advocacy Initiative is highlighted in an article in Capitol Ideas detailing our leadership and solutions for overcoming the disparity between adult and #childhoodcancer research funding. Capitol Ideas is a magazine of CSG sharing ideas for model legislation and top priorities for states across the nation. Special thanks to CSG for featuring ACCO. Read the full magazine here.
Meet 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.
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!
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.
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.