Receiving the news that a child has been diagnosed with cancer is absolutely heartbreaking for any parent as well as other family members and friends. Educating yourself about childhood cancer is vital to fighting the disease, while fundraising for childhood cancer awareness, critical research or for your own child with cancer can fund hope for new treatments and help ease the financial burden.
It’s important to first understand the impact cancer can have on a child’s life, according to Ruth Hoffman, executive director of the American Childhood Cancer Organization (ACCO). The organization was founded in Kensington, Md., in 1970 and has a board headed by parents of children who have battled cancer.
“Children with cancer don’t know what life is like before cancer as adults do,” Hoffman said, adding that her daughter was diagnosed with cancer at age 7 and developed secondary cancer at age 24. “She does not remember what life was like without cancer.”
Childhood cancer also defines who children are in a different way than in adults, as kids have a very different outlook on life, Hoffman added.
Key facts to know about childhood cancer
- According to the National Cancer Institute, each year in the U.S., there are an estimated 15,780 children diagnosed with cancer.
- Leukemias, which are cancers of the bone marrow and blood, are the most common childhood cancers, accounting for about 30% of all cancers in children.
- Cancer remains the most common cause of death by non-communicable disease for children in America.
The current outlook
According to Hoffman, statistics indicate that childhood cancer is on the rise, with the number of brain tumors appearing in children continuing to increase. Moreover, there has been very little drug development specifically used for childhood cancer in the last 25 years, especially compared to the amount of drug development for adult cancers. There have been two new drugs to treat childhood cancers introduced in the last 15 years: one in 2000 and one in 2015.
AML (acute myeloid leukemia) has shown no improvement in 25 years, with survival rates for children with AML in the 40% range.
“Much work remains to be done to improve outcomes for this group of patients, as the treatment being used 25 years ago is the same treatment being used today,” Hoffman said.
There has also been no improvement in the treatment of DIPG (diffuse intrinsic pontine glioma), according to Hoffman, who says on average, children are around 8 years old at the time of diagnosis, and their life expectancy is only around eight months.
“It is an extremely awful death,” she said.
There have been no changes in the treatment or survival rate of childhood bone cancer (osteosarcoma).
There have, however, been major advances in survival rates for childhood ALL (acute lymphoblastic leukemia) in first remission, which are now approaching 80%, while for children in underdeveloped countries with the disease, there is only a 20% survival rate due to lack of funds and access to medical treatments.
CAR T therapy, which uses a patient’s own immune system to fight cancer, is among the most recent breakthroughs in childhood cancer research, according to Hoffman.
“There have been 53 children in the U.S. who have been treated with CAR T therapy,” Hoffman said. “These children all had relapsed with AML, and now 94% of these kids are in complete remission.”
CAR T therapy is still in the experimental stages, being given to kids in phase 1 and phase 2 stages of cancer.
“This treatment appears to be very promising,” Hoffman said.
Meanwhile, the National Cancer Institute will be spearheading the funding for precision medicine to treat relapsed children with cancer.
Education is key
While a childhood cancer diagnosis is devastating, patients and families who educate themselves about the disease can increase the chances of beating it, according to Hoffman.
“If you don’t know what you’re facing, you can’t fight it,” she said. “It’s important at a child’s age level to understand that they can be empowered to fight childhood cancer. Being educated saves just as many lives as research.”
Education is extremely important to the ACCO. It is the largest producer of education materials and resources on childhood cancer in the U.S. In 2015 alone, the ACCO provided more than 45,000 learning resources to educate children, parents, teachers and others about childhood cancer.
Fundraising for childhood cancer
Raising awareness and funding research for childhood cancer is an incredibly powerful weapon in the fight against the disease.
ACCO has signature fundraising events to raise awareness year-round, including PJammin days to educate school-aged peers about compassion, and Go Gold for Kids With Cancer events, which utilizes the signature gold ribbon ACCO created as the symbol of childhood cancer in 1987.
Those wishing to contribute in their own way can launch an online campaign to start crowdfunding for kids with cancer to raise awareness, fund research, help alleviate the financial burden of cancer treatments and other costs, and pay tribute to a loved one who passed away.
Not only does a cancer diagnosis turn a child’s entire world upside down, it also adds a large amount of financial stress due to overwhelming medical expenses that most families are unprepared for. Cancer is known for being very costly, as research shows that families fighting this awful disease are twice as likely to go bankrupt as those that are not. In addition to treatment, there are additional costs to consider, such as food, lodging, and transportation to add to the already mounting stack of medical bills.
These are some of the reasons why more and more families are turning to crowdfunding nowadays. Setting up a crowdfunding campaign to help cope with the high cost of cancer care is a simple and effective way to receive support from loved ones and people all over the world.
Three successful GoFundMe children’s cancer fundraisers
Vinny was already a special kid. At 7 years old, he grew out his hair and donated it to be made into a wig for someone battling childhood cancer. Shortly after his generous act, Vinny himself was diagnosed with cancer. His grandparents started the fundraiser VICTORY for Vinny, and they raised more than $450,000 for this brave young fighter.
Jenesis (Jenny) Shaw is a childhood cancer survivor. When Jenny noticed that not every kid in the cancer ward had the same resources and support that she had, she knew she wanted to do something. That’s when her idea for hospital care bags was born. Jenny and her family turned to GoFundMe, where her fundraiser raised more than $67,000 to give other kids fighting cancer some comfort, care, and love.
Brett’s fundraiser for his nephew Luke has raised nearly $100,000 to date. He puts it best in explaining why he started this campaign:
“My nephew, Luke, who turns 2 in May, has been diagnosed with late stage Neuroblastoma, which is an aggressive cancer that has filled half of his abdominal cavity. His treatment will require a minimum of one year of chemotherapy, radiation and a possible bone marrow transplant.
His parents, Bill & Rachalle are struggling to decide whether to relocate to Memphis at St Jude’s Children’s hospital or if they should remain at UNC. They are both teachers and Rachalle must leave her position to care for Luke full time. They anticipate tremendous hospital bills, loss of income and frequent travel expenses for Bill if they decide to relocate Luke to Memphis.
The outpouring of love and support from everyone has been tremendous and is without measure. Cancer has a way of making everyone feel powerless to help. I’m hoping this will alleviate some of the pressure they are under so they can focus on the fight before them. Thank you for your continued love and generosity.”
Support kids with cancer through crowdfunding
Ready to kick off your own campaign for a child with cancer and family in need or to raise awareness about childhood cancer? Check out twelve ways you can support childhood cancer awareness. Launch a crowdfunding campaign today. For more information on stem cell treatment see our post Is Stem Cell Therapy Right For You?