Kristine Laplante could not believe it when her 6 month old daughter Evie was diagnosed with a brain tumour. “She had this crazy eye twitch that led us to our family doctor” says Kristine. “We learned that she had a cancerous brain tumour called a Hypothalamic Optic Glioma. Our lives were forever changed in that moment.” Evie is now 6 years old and has been on chemotherapy for most of her life. “There is currently no cure. Treatment is geared towards slowing the growth of the tumour until the research catches up.”
The reality is that brain tumours are the leading cause of cancer-related death in children, surpassing acute lymphoblastic leukemia (ALL). Funding for research specifically geared towards childhood cancer is grossly underfunded. Only 3% of Canadian government cancer funding reaches childhood cancer research. Yet more children die of cancer than from all other diseases combined.
“Funds are allocated based on statistics. More adults are diagnosed with cancer than children” states Christian Smith, Operations Manager at The Arthur and Sonia Labatt Brain Tumour Research Centre in Toronto. “Looking at only statistics is not enough. The average age of diagnosis for an adult is 67 compared to the age of 6 for a child. A child who dies from a brain tumour misses out on potentially 70 years of life.”
Jessie Paschek knows all too well how important research is. At 2 years old, her son Kohen was diagnosed with a brain tumour that covered over 35% of his brain. “We were in shock. We knew that children could get cancer but never thought it would affect our child and certainly never realized that he would have a minimal chance of survival due to lack of treatment options.”
Kohen has undergone two different chemotherapy protocols, radiation therapy and three separate stem cell transplants.” Now in kindergarten, Kohen is doing well. Jessie knows that it could all change in a heartbeat. “We live from MRI to MRI and try to raise as much awareness and funding as we can for research in case the unthinkable happens and his cancer returns,” she says. “Regardless of statistics, children should be the biggest priority when it comes to funding research.”
For adult cancer, over 50% of funding for drug development comes from pharmaceutical companies. For kids, that percentage is almost 0. Childhood cancer is complicated due to the growing minds and bodies of these young patients.
They are also not profitable considering the low percentage of the population that children represent. Only 3 new childhood cancer drugs have been developed in the last 20 years compared to 120 new therapies approved for adults.
Scientists rely heavily on private organizations to provide seed funding to get their promising research off the ground. “Without grassroots funding, scientists would have to frame their research according to government funding levels. There would be almost no funding to support new project ideas,” states Dr. Smith. Ideas like studying the genetic make-up of over 1000 medulloblastoma samples, the most common type of childhood brain tumour. Funds provided by Meagan’s Walk, a volunteer driven, non-profit organization out of Etobicoke, Ontario, allowed this study to move forward and led to the discovery that medulloblastoma can be broken down genetically into four sub-groups. The discovery of these sub-groups is poised to change the treatment paradigm for all children diagnosed with this leading tumour type.
Grassroots funding is making a monumental difference in the lab and promises a future of better, less toxic treatments for these young patients.
How can you be assured that you are supporting a grassroots organization that is focused on childhood cancer research not just cancer research in general? Ask the organization if they fund childhood cancer or paediatric brain tumour research specifically and ask for examples. A picture of a child on their marketing material doesn’t necessarily mean that a portion of what is raised goes to research specifically for children.
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book “A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer” hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Megan’s Walk (http://www.meaganswalk.com/); benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.