“She would most likely still be here if there were safer treatment options available to her when she had cancer."
Every Day 42 Children Are Diagnosed With Cancer
An estimated 160,000 to 250,000 children worldwide are diagnosed with cancer yearly before the age of 19. Of this number, approximately 90,000 die from cancer and continues to remain a serious killer in developed countries such as the United States, western Europe, Australia, Canada, and Japan. When it is detected late, only a few children have the opportunity for comprehensive care.
Today, young children are being prescribed adult drugs due to insufficient funding for pediatric research. These drugs are dangerous, and children die from these treatments and lack sufficient curative treatment options available.
Cancer survivor children are often left with debilitating and chronic conditions from the treatments they were given in the past. These treatments can sometimes even lead to secondary cancers.
Fewer than 10 drugs have been developed specifically for children with cancer since 1980 and only around 4% of federal funding is allocated to all types of childhood cancer, leaving knowledge and treatment of various types of childhood cancer very limited.
Many childhood cancers (for example, DIPG) are considered terminal at diagnosis due to this lack of funding.
Why Pediatric Cancer Research is Important
It is vital to conduct research and develop new, safer, and effective ways to conduct research and help mitigate childhood cancer and the late effects that survivors experience:
Basic research: It will enhance our understanding of the ultimate mechanism of cancer. Medical practitioners will have the essential guide to how cancerous cells work in children’s bodies.
Clinical research: Currently, children are administered with treatments designed for adults. Causing serious toxic complications. Only four drugs have been developed to help mitigate cancer among children. Thus, it is necessary to conduct tests and discover new treatment ways for the effectiveness and safety of our children.
Survivorship research: Most adult treatment strategies administered to children have only been fully successful for a few cases. Survivors have experienced long-term effects that lead to a reduction in quality of life and other serious complications throughout their lifetimes. Research will ensure long-term effects are reduced, and better treatment strategies are administered.
However, conducting pediatric cancer research poses a few challenges.
The causes of the genetic changes in cancers among children are currently unknown. Genetic changes driving childhood cancer are distinct from those in adult cancers, making it difficult to develop sufficient research about childhood pediatric cancer based on only general cancer research.
Speeding up progress against childhood cancer requires genomic data for clinical outcomes.
Is Childhood Cancer Actually Rare?
Childhood cancer is considered rare. However, according to The National Cancer Institute and The World Health Organization, it is the leading cause of death by disease among children and adolescents in the United States and is the 2nd leading cause of death by disease of children under the age of 15 in Canada.
Every two minutes worldwide, a child is diagnosed with cancer, and one in five of them will not survive.
So why only 4%?
The tragic and inspirational life of Novie Ridley displays the urgency and desperate need to fund and conduct pediatric research.
Novie Ridley Reminds Us Why We Need More Pediatric Cancer Funding
Novie Ridley passed away at 24 after battling chronic graft versus host disease (GvHD) for five years. Diagnosed with leukemia at 14, Novie was a bright and vibrant girl who displayed the urgent need for more funding for pediatric cancer.
In 2014, Novie’s cancer had spread to her brain and spinal cord, resulting in her undergoing intrathecal chemotherapy, surgery, and stem cell transplant prior to suffering through a third reoccurrence.
In 2016, Novie Ridley and her family discovered she had cancer for the third time. She went through a bone marrow transplant, which ultimately cured her leukemia for good.
However, Novie became sick with GvHD, a common and serious complication resulting in donor cells attacking the recipient’s body after Allogeneic stem cell or bone marrow transplants.
For five years, Novie’s lungs had been the most affected by GvHD.
Said her mother Audera Ridley:
“She spent so much time in the hospital in remission for leukemia even though she was just as sick. She never got a break. But she was always positive despite it all. She joked about her situation as 'trading one illness for another.' That’s exactly what it was. She was funny. She had what you would call 'dark humor' about her illness. Nothing could hurt her feelings regarding her illness. Although she was very shy, she was very open to questions. She was very articulate, and she was very passionate about helping kids with cancer. She wanted to teach about the need for funding so kids would not have to endure what she did. She wanted people to understand the consequences of lack of funding for kids’ cancer.”
Novie had also dealt with another condition called Williams syndrome, a genetic disorder sometimes known as the "Happy" syndrome, characterized by a deletion of a region in chromosome 7 that resulted in developmental delays.
Novie also had suffered from various mental health issues including borderline personality disorder and anxiety which made coping with her illness and treatment especially hard for her.
Her mother also believed that Novie may have had undiagnosed bipolar disorder.
“But being the resilient girl that she was, she worked very hard towards her recovery, not only physical but mental recovery as well. She participated in several different kinds of therapy, and she was starting to be herself again. She was making goals for herself and being very patient with herself and those around her. She was growing a deep understanding about herself.” said Audera.
Novie’s health was to get much worse in the winter of 2021. Her family tried to get her evaluated for a lung transplant again, but she was already too sick to be considered.
She went into heart failure and was put into hospice care at the end of December.
“She deteriorated quickly, and we did not have a lot of time after moving to hospice care. We had even less lucid moments with her. It was devastating for everyone who loved her dearly.”
Tragically, Novie passed away on February 20, 2022, at the age of 24. Just three months after celebrating five years cancer free.
"It was devastating for everyone who loved her dearly."
Novie’s family took notice of her passion for helping society understand the desperate need for more funding for pediatric cancer. They are picking up where she left off to continue her work in her memory. Her mother says:
“Whenever I think of Novie, I automatically just get the compulsion to shout her name and story. In any way that I can, to ensure I make up for all the years of life she has to miss out on and all of the people who would have learned her name and her story if she were alive.”
Novie loved horses and often played Howrse, a virtual horse game. She was part of a team on Howrse for the past seven years called Ribbons for Change. This group of online friends dedicated their time using their team platform to spread awareness for pediatric cancer.
In her memory, her family continues to strive to raise awareness for pediatric cancer through advocacy, fundraising for charities, social media work, and attending events.
“She would most likely still be here if there were safer treatment options available to her when she had cancer. She would not have had GvHD if there was something other than the bone marrow transplant available to her,” said Jeanine, a family friend.
In her own words, Novie said, “I try to live so that others who can’t, can still live through me. I hope people will continue that chain if I can’t anymore.”
Because of that, Novie’s family and friends vow never to stop fighting for pediatric cancer research.
- Contributors: Ishaq Awiti Seka, Audera Ridley, Jeanine Harden
This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2022 Mia Hensley