Gold Ribbon Hero: Adalyn

Posted on January 3, 2021 by American Childhood Cancer Organization

Meet Adalyn, an 8 year old Wilms’ tumor survivor!

When Adalyn (Addy) was 2 years old, blood was found in her diaper and complained of a stomach ache. She felt better after eating and went to bed. The next morning, her parents found more blood in her urine and took her to the emergency room. The physician that saw Addy felt a mass in her abdomen. She underwent a bedside ultrasound and a CT scan. The family was sent to the nearest children’s hospital via ambulance where they performed another CT scan and admitted her. Addy was scheduled for surgery just a few days later. Addy was diagnosed with a right sided Wilms’ tumor stage 3, favorable histology. “We were in denial, there was no way our child could have cancer,” said Melissa, Addy’s mother.

Just two days after diagnosis, Addy’s right kidney was removed. Treatment began immediately with 32 weeks of chemotherapy and 6 rounds of radiation. In May of 2016, Addy rang the bell and was declared cancer free however in December of 2016, Addy had relapsed with metastasis to the lungs. Addy spent her 4th birthday in the hospital and underwent a chest tube insertion and a lung biopsy. Her treatment now consisted of 8 weeks of chemotherapy and 8 treatments of radiation. On August 16, 2017, Addy completed treatment and is thriving!

Addy is now happier than ever and enjoys playing with her sister. She faced all of her treatment with a smile on her face and spent many holidays and birthdays in the hospital. Addy now helps to raise money for kids fighting cancer and is happy to share her story with anyone who will listen.

Learn more about wilms tumors here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Rory

Posted on December 27, 2020 by American Childhood Cancer Organization

Meet Rory, an animal loving neuroblastoma survivor!

During Rory’s second birthday party, a friend noticed that Rory’s eyes were two different colors of blue. At her check up just two days later, the doctor noticed that something was wrong with her eye when the vision scanner couldn’t obtain a reading. Upon further examination, the doctor noticed a change and recommended Rory be taken to the hospital.

Rory was taken to the hospital and after scans, she was diagnosed with group E unilateral retinoblastoma in her right eye. “We felt guilt that we didn’t catch it sooner, and feared the severity of the disease,” said Britt, Rory’s mother.

Rory’s parents faced a difficult decision to make when it came to her eye. They struggled between making a decision that she possibly wouldn’t like when she grew up or have her go through treatment. After mourning the loss of her eye, they made the decision to enucleate. When enucleation was recommended, we were initially uncertain about how to proceed” said Britt. The next week, Rory had her right eye enucleated.

Pathology showed that all of the cancer was removed and Rory was considered NED as soon as the enucleation was complete. Six weeks later, Rory received her first prosthetic eye.

Since having her surgery, Rory has gone back to running around like a typical toddler. She loves caring for her horse and all of her other animals.

Learn more about retinoblastoma here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Thank You Partners

Posted on December 26, 2020 by American Childhood Cancer Organization

The American Childhood Cancer Organization would like to thank our generous corporate partners who helped further our mission in 2020! Together, through 2020, we continued to “make childhood cancer a national child health priority through shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors, and their families.” Through these partnerships, ACCO has been able to impact the lives of tens of thousands of children with cancer on active treatment and their families across the U.S. From donating a percentage of sales, to offering customers the opportunity to give, these corporations have strengthened their partnerships with ACCO during this unprecedented year.

For the fourth year, Amazon has worked with the American Childhood Cancer Organization to deliver smiles around the world. Through STEM programs, PJammin® events and special edition GO GOLD® shipping boxes, Amazon has helped raise awareness for childhood cancer in a big way! In 2018, Amazon + ACCO unveiled the largest childhood cancer icon, a massive Amazon Prime plane emblazoned with a gold ribbon featuring ACCO’s tagline “because kids can’t fight cancer alone®!” With Amazon’s continued funding support, ACCO has expanded its Why Not Kids initiative to seven target states. Based on successful advocacy in Kentucky and working alongside state governments in PA, NJ, NY, DE, MD, CT and NH, ACCO is working hard to train grassroots advocates, update state cancer plans to include childhood cancer language and objectives, and elevate state funding for childhood cancer in order to close the gap between budget allocations that go towards adult and childhood cancer research.

La Roche Posay, one of L’Oreal’s brands and recognized worldwide as the number one rated dermocosmetic product line, extended its partnership with ACCO to enhance the quality of life of children with cancer. Based upon the design and impact of the pediatric pain scale, La Roche Posay + ACCO designed an Emoji scale tool to help children with cancer express their feelings. The toolkit allows the child, his/her family and the medical team explore the emotions associated with the treatment regimen and beyond. La Roche Posay + ACCO are excited to expand their partnership with the launch of additional joint programming in 2021 that will further enhance the quality of children and adolescents with cancer.

Since 2008, ACCO’s partnership with Jel Sert has helped children with cancer manage the physical and emotional pain associated with toxic cancer treatments. Jel Sert + ACCO donates freezers stocked with a continuous supply of Fla-Vor-Ice freezer pops to kids with cancer in clinics and hospitals nationwide to assist with maintaining fluids during times of chemo and radiation induced mouth sores. Jel Sert’s generous funding allows ACCO to provide tens of thousands of free educational resources to children with cancer and their families across the country, and Jel Sert’s CEO’s personal commitment provides funding for key pediatric oncology staff in Addis Ababa, Ethiopia.

Servier Pharmaceuticals provides funding support for ACCO’s Founding Hope programs through webinars, training opportunities and materials. As our “boots on the ground” in 23 states, ACCO’s Founding Hope chapters provide the critical financial assistance to families of children with cancer in their local areas. Servier’s financial support led to ACCO’s reprinting of our Cozy Cares Journal and Dance in the Rain Teen Journal. Through Servier’s corporate philanthropy, ACCO is able to continue to provide these essential educational resources without charge to children and adolescents with cancer. Servier also recognized the global childhood cancer survival disparity. As the producer of Peg-asparaginase, an essential chemotherapy required in the successful treatment of numerous types of childhood cancer, Servier addressed the medical needs of children with cancer in several low-middle income countries (LMICs). Together. Servier + ACCO provided nutritional support to children with cancer in Ethiopia, Uganda and Myanmar, recognizing that malnourished children with cancer have a significantly poorer cure rate. And in partnership with ACCO, Servier responded to the shortage of asparaginase in Beirut after the deadly explosion that took place there on August 4th.

18Loop and TRIPP have joined forces with ACCO to launch the Virtual Comfort research program for children with cancer. In existing studies, Virtual Reality (VR) headsets have shown to reduce cognitive pain by 44 percent, emotional pain by 32 percent, and sensory pain by 27 percent. In a joint experimental intervention research study, 18Loop + ACCO have distributed 5 Oculus headsets to children on active cancer treatment. In 2021, an additional 10 VR headsets will be distributed to further assess the qualitative impact on managing physical pain, emotional stress and anxiety.

Interested in becoming an ACCO corporate partner? Click here to learn more.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Caston

Posted on December 20, 2020 by American Childhood Cancer Organization

Meet Caston, a 3 year old superhero loving stage 3 neuroblastoma warrior.

After finding a bend in his spine, Caston’s parents took him to the pediatrician. X-rays were taken and revealed a bend in his back and Caston was referred to Scottish Rite hospital. The family was told that they needed to wait four months and come back. In March 11, 2019, Caston was diagnosed with stage 3 neuroblastoma.

Due to the pressure put on his spine, Caston was admitted to the hospital. Treatment started immediately and doctors tried their best to get most of the neuroblastoma out – they were successful in getting 40-50% out and put Caston back on chemotherapy. He has had 3 surgeries, 10 chemotherapy treatments, 8 months of accutane and doctors are hoping that after the next four rounds of chemotherapy he will be clear. He is currently off treatment and is being monitored closely by his doctors to see if the tumor will mature.

Throughout treatment, Caston remains strong and happy making his family very proud.

Learn more about neuroblastoma here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Mariangel

Posted on December 13, 2020 by American Childhood Cancer Organization

Meet Mariangel, an acute lymphoblastic leukemia warrior!

Mariangel was in pain and lost her appetite. She refused to play with friends and siblings and could not walk so her parents took her to the hospital. On March 15, 2020, Mariagnel was diagnosed with acute lymphoblastic leukemia.

Treatment began almost immediately and as a result Mariangel has developed severe anemia. She started her first phase of therapy and is looking forward to completing the next phase of therapy.

Learn more about ALL.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Ethan C

Posted on December 6, 2020 by American Childhood Cancer Organization

Meet Ethan, a 13 year old Ewing’s Sarcoma warrior!

When Ethan started limping because of hip pain and swelling, his parents took him to his doctor. It started with a slightly sore leg and very mild pain at the beginning of October 2019 and Ethan was misdiagnosed at the ER. When the pain continued, doctors ordered multiple scans and a biopsy which confirmed that the mass on his pelvis was Ewing’s Sarcoma. Prior to the diagnosis, Ethan and his family met with oncology a few times to see what type of cancer it was. Ethan’s family decided to take several weeks before sharing the diagnosis because they were in shock. On December 30, 2019, test results confirmed Ewing’s Sarcoma.

Leading up to diagnosis, Ethan had to undergo a port placement, 2 MRI’s, a CT scan, bone scan, biopsy, and several x-rays. Before treatment started, Ethan was afraid of needles and since then, he has overcome his fear. His treatment plan included 14 rounds of 5 different types of chemotherapy and 31 rounds of radiation.

Ethan has become wheelchair bound as a result of nerve and bone pain and cannot bear weight on his leg. Despite it all, Ethan has been able to hit the gong upon completion of radiation! Ethan has become an inspiration to his parents, friends and family.

Learn more about Ewing’s Sarcoma here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Juanita

Posted on November 22, 2020 by American Childhood Cancer Organization

Meet Juanita, an ambitious ALL survivor!

When Juanita was 10 years old, she started experiencing pain in her leg. Her parents quickly took her to the emergency room where they escorted her to the oncology cancer clinic. “The shocking and devastating news was extremely hard for them to tell me. My doctors and parents told me to take a deep breath and began comforting me. That day I met many strangers who walked into my room. I was very uncomfortable with all of them. I just wanted to go back to school and be with my friends like a normal child. That day, I didn’t expect that everything from that day forward would turn into my worst nightmare.” Juanita was diagnosed with pre-B cell Acute Lymphoblastic Leukemia (ALL). She would later relapse in September 2006.

Juanita spent five years in and out of the hospitals and often felt very isolated. Treatment started almost immediately after her diagnosis. She took more than 50 pills daily and received chemotherapy, radiation, blood transfusions and spinal taps. Juanita experienced complications throughout her cancer journey including vision problems, a CNS relapse and a secondary seizure disorder. She suffered a stroke that paralyzed her from head to toe and had to relearn how to do everything from eating, drinking to everyday activities like walking and bathing. Following her relapse, Juanita had 9 weeks of conventional radiation.

Due to her neurological complications, Juanita learned a little slower than normal. In community college, Juanita was able to motivate herself and turn things around from negative to positive. Community college empowered her to slowly gain her independence. Juanita was able to transition from community college to a four year university to follow her heart by majoring in Human Development. Juanita is on track to become a Certified Child LIfe Specialist.

Today, Juanita suffers from epilepsy and late effects of childhood cancer. She doesn’t let it bring her down and she continues to advocate for childhood cancer. Juanita has been cancer free for 12 years and is enjoying every day to the fullest. Juanita said, “facing adversity at a young age made me resilient and taught me to never take things for granted, to be appreciative of my life, to be appreciative of the people who surround me, to be appreciative of all the opportunities that arise and the ones that don’t.”

Learn more about pre-B cell Acute Lymphoblastic Leukemia click here.

Juanita was featured earlier this year as part of our survivor series. Read her survivor story here.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

How is Childhood Cancer Different from Adult Cancer?

Posted on November 20, 2020 by American Childhood Cancer Organization

Cancer can strike at any age, from infancy through adulthood. But the cancers that affect children are unique in several key ways. Here’s a breakdown of how childhood cancer is different from adult cancer.

Children get different cancers than adults do.

The most common cancers that adults get are lung, breast, colorectal and prostate cancer, but these are extremely rare in children. The most common cancers in children are leukemia, brain tumors, lymphomas and sarcomas. Some childhood cancers, like retinoblastoma and neuroblastoma, are almost always diagnosed in young children.

Cancer behaves differently in children than in adults.

Children’s bodies are different from adult’s, and even when it’s the same type of cancer, childhood cancer tends to behave differently than adult cancer. This is why it’s so important that children with cancer are treated at a pediatric cancer center, where they can be cared for by a team that specializes in children with cancer and their unique needs.

Childhood cancers are aggressive.

When an adult is diagnosed with cancer, they can often take some time before beginning treatment to visit with family, take a special trip or cross some things off their bucket list. But children typically need to start treatment right away. This is because their cancers tend to be more aggressive, and they are often more advanced when they are diagnosed.

Childhood cancers are treated differently than adult cancers.

Because their cancers tend to be aggressive, children with cancer need aggressive treatment. This makes them more susceptible to late effects — side effects that can surface months or years after treatment ends. Two out of three childhood cancer survivors will experience late effects from their treatment, and some — like heart disease, diabetes and secondary cancers — can be life threatening. Most childhood cancer survivors need to be monitored for these late effects for the rest of their lives.

There’s nothing a parent can do to prevent their child from getting cancer.

Doctors don’t know why some children get cancer. Unlike many adult cancers, childhood cancers aren’t caused by lifestyle choices, like diet and smoking. Though very rare, there have been some cases where children developed cancer from exposure to environmental toxins, such as polluted drinking water. And there are some genetic conditions, like Down syndrome and Li-Fraumeni syndrome, that increase a child’s risk of getting cancer. But for the most part, childhood cancers happen because of spontaneous genetic mutations, or random changes in the child’s DNA. Because these changes happen randomly, there’s no way to predict who will get childhood cancer and when, and there’s no way to stop it from happening (though it’s possible scientists could find a way in the future).

We can’t stop childhood cancer from striking, but we can give our support to the children and families facing the most difficult time of their lives. Your donation to the American Childhood Cancer Organization will help us continue to advocate for and provide resources and support to children with cancer and their families. Please give today.

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

Gold Ribbon Hero: Gabriel S.

Posted on November 15, 2020 by American Childhood Cancer Organization

Meet Gabriel, a forever one year old atypical teratoid rhabdoid tumor (ATRT) warrior.

At six months old, Gabriel was at a check up when the doctor noticed his head size was off the charts. The doctor was not concerned at first but she wanted to do an ultrasound to put their minds at ease. At seven months old, Gabriel was taken for his ultrasound appointment. The ultrasound tech came into the room three separate times to get images which triggered Gabriel’s parents, Erika and Gilberto, to suspect something might be wrong.

The family was advised that his ventricles in his brain were much larger than normal and he possibly needed a shunt. He was sent to the emergency room immediately. A few hours later, the family met with the neurologist who explained that they wanted to do an MRI to take a look at his ventricles much closer. When the MRI was complete, it showed two masses on his brain. The next morning, Gabriel had a biopsy to confirm his diagnosis of ATRT.

On September 29, 2010, Gabriel was diagnosed with ATRT and they were told he had an 11% survival rate, even with treatment. The initial treatment plan included 52 weeks of chemotherapy and 6 weeks of proton therapy radiation. Treatment began in October 2010 and after undergoing 11 months of treatment, an MRI revealed two masses grew back in his brain, two in his spine and one on his kidney. Chemotherapy continued to slow the progression of the tumor with minimal side effects and on January 27, 2012, Gabriel passed away, just a month shy of his second birthday.

Gabriel’s mother, Erika decided that she’d help make an impact on childhood cancer by starting a facebook page to help raise awareness. She helps by arranging a toy drive around the holidays and donating them to kids at the hospital where Gabriel was treated – Children’s Healthcare of Atlanta, Scottish Rite Campus and the Aflac Cancer Center.

Learn more about brain tumors here: https://www.acco.org/brain-cancers/

Together, we can make a difference.

Donate today… because kids can’t fight cancer alone®.

The Pop Tab Kid Raises Awareness

Posted on November 13, 2020 by American Childhood Cancer Organization

Grayson is helping kids with cancer by raising awareness!

In October 2014, Grayson was airlifted to Minneapolis for emergency surgery. At that time, the family found out about a mass in the center of his brain, which blocked fluid from draining into his brain stem and down his spinal cord. He was only four years old. After a biopsy, the family received Grayson’s diagnosis – grade 2 diffuse astrocytoma, a cancerous brain tumor.

Grayson has gone through radiation treatment, chemotherapy, various medication changes, and robotic surgery. Grayson is a survivor. Through it all he continues to sport an attitude of joy.

In September of 2020, Grayson encouraged his elementary staff and students to “GO GOLD” for childhood cancer awareness. Every Friday, the students and staff wore gold to show their support. Schools in his area even contributed to the awareness events by ‘going gold’ in their own way.

In mid September, Grayson led the football team onto the Spearfish Spartans field. “That night, Grayson was glowing brighter than his gold cape that he was wearing. While the team and Grayson entered the field the announcer was telling Grayson’s story, he ended by encouraging everyone to wear gold and support childhood cancer awareness. “It was a tearful event for this momma’s heart” said Chelsey, Grayson’s mother. Most of the football players knew Grayson’s name and were happy to see him. They welcomed him onto the field with fist bumps, high fives and hugs.

Grayson is 10 years old, in fourth grade and thriving. He even encouraged his community and surrounding areas to “GO GOLD” for childhood cancer. In early October, Grayson and his family entered their custom vinyl decaled van which says “Go Gold for Childhood Cancer Awareness” on all sides. Grayson, his family and friends walked or rode bikes down the streets of Spearfish, South Dakota in the homecoming parade to help raise awareness for childhood cancer. Thirty kids wearing gold capes and “No One Fights Alone – Be Bold, Go Gold” shirts and riding their bikes, which were decked out in gold ribbons, showed their support and encouraged their community to “GO GOLD” for children fighting against cancer.

The American Childhood Cancer Organization provides resources and support to families of children with childhood cancer. Please donate so we can continue to provide our services free of charge.