Gold ribbon a reminder of children who won’t be going back to school

Evelyn Wilson thanked Prince Edward County Council for declaring September as Childhood Cancer Awareness Month.

“I have been double-whammied by childhood cancer,” she told councillors Tuesday night at Shire Hall. “I lost my twin brother when I was six to leukemia in 1973, and in 2011 my daughter Katie passed away from osteosarcoma, Terry Fox cancer, at the age of 15.”

Handing out signature gold ribbons, Wilson has been an advocate for local families dealing with childhood cancer. The ribbon represents children and teens battling cancer.

Evelyn Wilson with a photograph of her daughter Katie

“Every year in Canada 16,000 kids and teens are diagnosed with childhood cancer and there are currently over 10,000 kids in Canada living with cancer. About one in five of these kids will die.”

Wilson stated the reality is the stats are skewed because if a child survives five years and dies in the sixth, seventh or eighth year, that person is statistically deemed a survivor and not a death.

“We need to change how childhood cancer is viewed. Out of the 80 per cent of kids who survive, 70 per cent of them have life-long health issues, whether it be a heart transplant, a lung or other issues, and are likely to get another cancer.”

Wilson said childhood cancer is not like adult cancer and treatments are different.

“There have only been four new drugs in the last 40 years for childhood cancer. They have created children’ Tylenol, children’s Advil, everything but children’s chemo. The kids get the same chemo as adults and their treatment is much longer. For example, many child leukemia patients the treatment can be up to five years while the typical adult leukemia patient the treatment is six to eight months,” she said.

She noted that while people think childhood cancer is rare, there are about 40 to 50 families locally who travel to hospitals in Kingston, Toronto and Ottawa.

“Currently, the Canadian government only allots four per cent to childhood cancer research funding. It’s the families of kids cancer warriors who are the ones who are raising funds through bake sales, head shavings, etc. because the government doesn’t think our kids are worth it. The average age of a child diagnosed with cancer is six and the average age of an adult is 66. So when a child is lost they’ve lost on average 77 years of their life where as an adult has lost 11 years.”

It is awareness that families need, she said.

“It costs us families hundreds of thousands of dollars to travel and deal with the costs of a child in hospital. Yes our community and this area is fantastic, but when you add the cost of gas to larger centres and costs for meds – one of my daughter’s meds was $2,700 and was not covered. The cost of living in Toronto is enormous and not everybody can get in the Ronald McDonald House, and one parent is usually not working to take care of their kid.”

The focus, she said, is to bring awareness to the lack of research.

“My daughter had the same treatment as Terry Fox had 35 years prior to her, and many of the drugs given to children are from the’70s. Our kids are missing out because they’re too young. Katie was denied a promising drug for her cancer because she wasn’t 18.

“Having the county proclaim childhood cancer month and promoting the gold ribbon brings awareness to the fact that are kids deserve more, they deserve to be heard and it shouldn’t be the families that are trying to deal with a sick child in a hospital bed that are emailing asking for help,” said Wilson. “We need government officials to start promoting and saying we need to do something for our kids because awareness brings funding, so I give you some gold ribbons in hope that when school rolls around you will think of the many kids who are not going back to classrooms and who will never experience growing up.”