Mason’s Data Story

Posted on February 7, 2021 by American Childhood Cancer Organization

“As parents, you want your child’s life to matter and their legacy to live on forever.”

In February, 2016, Mason was diagnosed with T cell acute lymphoblastic leukemia. Survival rates for childhood ALL in first remission are now approaching 90% while ALL accounts for about 75% of leukemia patients. When Mason was originally diagnosed, he followed the intermediate protocol by Children’s Oncology Group (COG), until relapsing in July of 2017. His initial relapse occurred in his spinal fluid and after much discussion, his doctors advised that the best path to take was to receive a bone marrow transplant. After completing his first month of 1st Grade, In October 2017, Mason had his bone marrow transplant. Unfortunately, Mason relapsed again in December. After fighting like the true warrior he was, in March 2018, Mason passed away from respiratory distress among other complications of his cancer.

Being treated at Children’s National in DC, during the course of Mason’s treatment, Keli remembers that the doctors would come in from time to time asking if they would like to participate in a research study. Keli recalls spending time understanding the specific studies and always being willing to have Mason participate.. “We were willing to do anything that might help the team help other warriors like Mason and learn from his treatment.”

Data became incredibly important to warriors like Mason because without it, some treatments would not have improved and changed. Childhood cancer researchers benefit from the donation of blood, urine, tissue and other samples as that data can potentially help in life saving treatments.

When Mason’s battle with cancer ended, Keli, Mason’s mother, shared that “when he passed away, we had a choice to grieve privately to deal with the emotions we were facing or to be out there with the community supporting us. Giving back is my therapy. Carrying Mason in my heart he keeps me moving forward spreading joy in his memory.” Part of “giving back” to the childhood cancer community was started while Mason was in treatment, participating in research studies and what we carry forward is his hope and joy to other warriors and families..

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here.

David Jr.’s Data Story

Posted on February 6, 2021 by American Childhood Cancer Organization

David Jr. and his family are on a mission to help raise awareness for childhood cancer, one day at a time. When David Jr. was diagnosed with DIPG, diffuse intrinsic pontine glioma, his family was determined to make every day the best day ever. The family’s focus shifted to creating memories for David Jr. while advocating for childhood cancer in their home state of Kentucky.

DIPG is a type of brain tumor occuring in the pons, a part of the brain that controls many basic functions like breathing, sleeping, swallowing and regulating heart rate. It remains one of the deadliest forms of childhood cancer, with a long-term survival rate of less than 1%. David has been fighting DIPG for the past 33 months, while the normal patient does not survive more than 24 months.

Symptoms started very quickly and he was unable to roll during karate class. When his head was droopy and he started to act goofy, his parents took notice. After complaining of a headache and dizziness, the pediatrician advised David Jr.’s parents to take him to the emergency room where a stat MRI was performed. He’s been fighting for his life ever since.

“Life with David is an adventure everyday. We have done as much as we can. He went to kid prom, he has been traveling and riding roller coasters. He loves to go to the beach. We have made every day the best day ever and an adventure for him. We wanted him to have as many memories as possible” said Elizabeth, David Jr.’s mother.

Alongside his mother, Elizabeth and father, David, David Jr. helps to advocate for childhood cancer. He was able to meet the Governor and Senator of Kentucky where he helped declare May 17 as DIPG Awareness Day.

“I’ve had the great privilege of meeting David Turner on multiple occasions now, and even had the opportunity to introduce him on the Senate floor,” said Sen. Morgan McGarvey, D-Louisville. “David is a fighter and has been instrumental in helping raise childhood cancer awareness in the Commonwealth. He is a courageous fighter and an exceptional advocate.”

You can read more about David Jr. by clicking here.

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here.

Gabriella’s Data Story

Posted on February 5, 2021 by American Childhood Cancer Organization

“I need my childhood. Less and less kids are going to have their childhood if people don’t raise awareness and raise funds. Stop talking and start doing. We need action.” Gabriella was just 10 years old when she said these wise words just two weeks prior to her passing.

When Gabriella was only 9 years old she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), a terminal brain cancer. Doctors found that she had an inoperable tumor that was the size of a walnut. She quickly became a global advocate for kids with cancer and founded the Smashing Walnuts Foundation; whose mission is to increase awareness for childhood cancer and fund childhood brain cancer research. Less than a year after diagnosis, Gabriella was taken too soon. She was surrounded by family and friends who promised to continue her work.

In April 2014, the Gabriella Miller Kids First Research Act was signed into law. This Bill launched a pediatric research initiative through the National Institutes of Health (NIH). When fully funded it will appropriate $126 million for childhood cancer and disease research. To date, $88 million has been appropriated in seven consecutive years as a result of Gabriella’s mission towards childhood cancer research. This funding source sunsets in just three short years.

The Gabriella Miller Kids First 2.0 was recently introduced in the House (H.R.623) with bipartisan support. It will provide a unique, perpetual revenue source that will continually fund the Kids First Research Initiative at NIH. The monies come from existing penalties against pharmaceutical companies, medical device manufacturers, cosmetic and natural supplement industries that violate the Foreign Corrupt Policy Act.

Take action by supporting The Gabriella Miller Kids First 2.0 bill by clicking here.

Their data matters. Their life matters. Every child leaves a mark. Learn more about the Childhood Cancer Data Initiative this International Childhood Cancer Day, February 15, 2021, by clicking here.

Gold Ribbon Hero: Dana

Posted on January 17, 2021 by American Childhood Cancer Organization

Meet Dana, a fearless forever stage IV ganglioglioma warrior.

Dana was a normal 11 year old when she was diagnosed with brain cancer. After attending an appointment with her grandmother she began vomiting on the way home. The vomiting was accompanied by extreme lethargy and a headache. Dana’s parents suspected she had food poisoning and took her to urgent care. When they walked into urgent care, Dana collapsed. Doctors suspected that she was dehydrated and gave her medication which did not agree with her. When the vomiting didn’t stop Dana’s parents took her to the emergency room where she collapsed again. Dana was rushed to the resuscitation room and blood was taken. When Dana’s bloodwork came back normal, a CT was performed. The CT revealed a golf ball sized tumor on the back right side of her head. Dana was admitted to the hospital immediately and taken to the ICU where she suffered from three seizures.

Dana had a craniotomy performed on the right side of her brain five days after the initial symptoms and the family was told the tumor was very aggressive. The doctors advised Dana’s parents that she needed radiation immediately. As a side effect of the brain surgery, Dana had left side weakness and vision problems. She complained of neck and leg pains after beginning radiation but remained positive despite everything she dealt with.

After completing radiation treatment, Dana experienced headaches and was brought into the hospital for observation. The cancer had spread down her spine which explained her pain. After suffering two seizures, she was rushed to the ICU where things got worse. On January 17, 2020, Dana was placed in hospice care and gained her angel wings just a few hours later surrounded by family and friends at her bedside.

During the three month cancer journey, Dana’s family and friends were beyond helpful. Their support system brought things to the hospital and would take turns going to show support and make sure that Dana was comfortable and in good spirits.

Learn more about brain and spinal tumors by clicking here.

Together, we can make a difference.

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

Gold Ribbon Hero: Mighty Mason

Posted on January 10, 2021 by American Childhood Cancer Organization

Meet Mighty Mason, a 5 year old neuroblastoma warrior!

When Mason started experiencing headaches and vomiting at three years old, his parents knew something wasn’t quite right. His parents brought him into the emergency department for scans and a blood test. The doctors found multiple tumors on his brain and his main tumor was found on his left adrenal gland. “Our hearts were broken, we never expected his symptoms to lead us to a cancer diagnosis” said Ellen, Mason’s mother.

Treatment started with five rounds of chemotherapy and one surgery resection of his adrenal gland tumor. The adrenal gland resection revealed that he had relapsed which meant he went in for two rounds of immunotherapy and additional chemotherapy.

Because of COVID, Mason’s father lost his job and the pandemic made separation during treatment difficult. The family had to work with the insurance company to figure out proton radiation and MIBG therapy needed later in treatment.

During the pandemic, Mason and his family helped cater lunch at the emergency department that helped him the night he was diagnosed with neuroblastoma. He spends his time playing with his two dogs and enjoys watching and playing sports.

Learn more about neuroblastoma by clicking here.

Together, we can make a difference.

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

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.