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 Natalie, a 12 year old aspiring astronaut who wants to become the first woman to walk on the moon! This courageous and determined little girl is a wilm’s tumor survivor!
At three years of age, Natalie was diagnosed with a bilateral Wilm’s tumor. Symptoms started with a swollen stomach and developed into vomiting and constipation. Her pediatrician ordered an x-ray of her abdomen and initially said it was stool in the images. As a precaution, labs were drawn which came back showing Natalie was severely anemic. She was sent home and ended up in the Cincinnati Children’s ER that night. The family was in the ultrasound room for more than an hour before receiving the diagnosis.
Natalie was immediately admitted into the ICU and chemo started within a few days. A month later Natalie was rushed into emergency surgery in septic shock due to complications and as a result, the tumor and her right kidney were removed. After two months in the hospital, Natalie was released. Four months after the initial diagnosis, Natalie had surgery to help salvage her left kidney however doctors had to remove it and place her on dialysis. Over the next year, she was put under daily chemo and dialysis treatments. In October of 2012, Natalie received a life saving kidney transplant from a family member.
Today, Natalie is a normal 12 year old who loves spending time with family, drawing and participating in drama club. She was officially cured in October 2016 and is very thankful to be a survivor. She still has to go in for labs and doctors visits, but according to her mom Tracy, “she handles all of that like the pro she is.”
Please join ACCO in sending well wishes to the young astronaut to-be, Natalie!
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 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 got to meet 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.
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!
Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.
Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.
Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.” The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.
Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.
Grace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.
According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”
Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys talking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!
*Special thanks to Barbara Zobian and the Candlelighters NYC*
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. email@example.com; 202-262-9949.
Today marks the beginning of Childhood Cancer Awareness Month, September 2016
Each September we hope to raise much needed awareness for childhood cancer and we can’t do that without your help. To start, please take a moment to share this page on your social media profile, in an email or however you would like with your community by copying and pasting this website address https://www.acco.org/blog/childhood-cancer-awareness-month-2016/. Then, learn about the many ways that you, your family and friends, and your community can help:
The Gold Ribbon: The international awareness symbol for Childhood Cancer is the gold ribbon. Wear or display a gold ribbon for everyone to see this month. Put a gold ribbon car magnet on your car, share gold ribbon stickers, wear a gold ribbon pins or make your own gold ribbon Add a gold ribbon to your social media images and add a gold ribbon emoticon to your posts and status updates. Provide gold ribbons for your child’s school, for your fellow employees at your place of work and/or for your church or other group. Click Here to learn more about the Gold Ribbon.
Go Gold®: Change you profile, cover and header images on your social media to gold or gold themed images. Ask everyone you know to show their support by changing their images to gold themed images. You can also wear gold, host a “Go Gold®” event or think of any creative way to share gold this September. Although many colors were considered, gold was agreed upon as the ideal choice for childhood cancer awareness because gold is a precious metal, and is therefore the perfect color to reflect the most precious thing in our lives—our children. Click Here to learn more about Childhood Cancer Awareness Month. (“GO GOLD®” and “GO GOLD for Kids with Cancer®” are registered trademarks of ACCO. ACCO registered the marks to protect the identity of the gold ribbon and GO GOLD expression and its derivations to the childhood cancer cause.)
Wearing Awareness Items: Wearing awareness items such as our awareness shirts, gold ribbons, “Go Gold®” bracelets, gold pins or other awareness items items. Our awareness shirts and items support ACCO’s programs and help us to provide free resources to families facing a childhood cancer diagnosis. Many of our shirts feature thousands of names that each represent a precious life and an entire community of people whose lives have been forever changed by childhood cancer. Click Hereto see our 2016 Go Gold Awareness shirts (only available until September 12th) or Here for other awareness items.
Host an Event:ACCO offers many ways for individuals, corporations, schools and any other groups to host ACCO signature events to help support children and teens with cancer. We help organize your event, provide prizes and event materials, a website portal for groups, team and/or individuals to collect donations, and depending on the size of your event, provide marketing options. Click Here to learn how to get involved.
Supporting the STAR Act:What could be a better way to kick off September as Childhood Cancer Awareness Month than adding your support to the most comprehensive childhood cancer bill ever in US legislative history: the STAR Act! We need your help reminding Chairman Upton that this bill is important and that it deserves a hearing! Click Here to learn more about how you can help.
There are so many wonderful and creative ways to help raise awareness about Childhood Cancer, and we are honored to help you however we can. If you would like to learn more or discuss your ideas about raising awareness this month, please feel free to Contact Us Here. We can’t wait to help you Go Gold® for kids with cancer this September! Please take a moment to view all of the many options on our website.
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.