Family hopes Evan's story raises focus on brain cancer research
Graham Slaughter, CTVNews.ca
Published Thursday, November 12, 2015 3:56PM EST
Last Updated Thursday, November 12, 2015 10:48PM EST
While seven-year-old Evan Leversage’s short life may be nearing its end, his story is helping other children with brain cancer feel less alone.
Evan drew international attention in October when his hometown of St. George, Ont., granted him his wish of celebrating Christmas one last time. Shops and houses were adorned with tinsel, fake snow blanketed lawns and a parade marched through town, with Evan seated next to Santa.
Last week, Evan was admitted to palliative care for his inoperable brain tumour, which has grown in recent months.
His story has been spread far and wide, but it has particularly struck similar children affected by juvenile brain cancer.
Diagnosed as an infant, six-year-old Xavier Garrett and his Woodstock, Ont., family have dubbed his tumour “the dragon in his head.”
He has undergone three brain surgeries and chemotherapy, but doctors say his tumour is incurable.
"His prognosis is … we don’t know, because it won’t go away. There is nothing out there that will make it go away," Carla Garret, Xavier’s mother, told CTV News.
Xavier and Evan’s stories share striking similarities. Both were diagnosed before their first birthdays, both were in remission for several years and both had aggressive tumours return with little hope of treatment.
But even through the odds are slim, Xavier’s parents say they have drawn inspiration from Evan’s story.
"I am very thankful that Evan’s story did get out there and there’s a lot of kids out there suffering and going through this journey," Garret said.
- Donate to Evan's Legacy to help fund brain cancer research
- Carla Garrett's writes about Xavier's difficult journey
- Watch Garrett's YouTube channel
A doctor who has treated both Evan and Xavier says that continued research into better treatment is essential in the ongoing fight against childhood brain cancer.
"Some of the brightest minds are working on this problem right now," said Dr. Adam Fleming, a pediatric oncologist with McMaster Children’s Hospital. “We just need to unlock some more secrets and the code of what’s happening.”
Surgery and radiation therapy remains a “mainstream” treatment for children with brain cancer, Fleming said, but added emphasis needs to be placed on areas such as drug and chemotherapy research.
Not all childhood brain cancers are incurable. In fact, survival for some tumours is up to 75 per cent. But Fleming says that Glial tumours -- an aggressive form that both Evan and Xavier have -- are far more challenging, with survival rates between 5 per cent and 25 per cent.
"Sometimes the medical advances that we’re looking at are a decade behind what we see with children with leukemia and other types of cancer."
He applauds families affected by juvenile brain cancer for speaking out to raise awareness.
"I do this because I care about these families a lot. I want to see anything that can be done better, I want to see it done better for them," he said.
With few options left for Xavier’s treatment, his mother says the family is relying on a medical breakthrough.
"That is our hope -- that research and awareness and new discoveries is exactly what’s going to save my little boy," Garret said.
Evan’s family has committed to make an enduring impact in the fight against brain cancer, the second-most common cancer among children.
A fundraiser called “Evan’s Legacy” has been established to raise money for childhood cancer research.
Even after Evan is gone, his mother says she promised her son that she will make sure his message is heard "loud and clear."
"I promised Evan, and I said that I will be your voice. I will make sure that there’s awareness," Wellwood said.
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip