Earlier this month, childhood cancer advocate and Prince Edward County resident Evelyn Wilson took a few moments to speak during a council meeting at Shire Hall about the prevalence of and devastation caused by childhood cancer. Wilson passionately informed listeners of the dire need for more attention to be paid to this, advocating that September be deemed childhood cancer awareness month.
Wilson speaks from experience. Having a twin brother that passed away from leukaemia in 1973 and a daughter who passed away from osteosarcoma in 2011, she knows all too well what she speaks.
“Our family has been thrust into discovering what childhood cancer does to families,” stated Wilson.
Armed with startling facts regarding this silent killer, Wilson gave a voice to what has becoming the leading cause of death for children aged six months to the late teens.
“Unlike adult cancers, the cause of childhood cancers are still unknown and are not related to lifestyle or environmental factors” said Wilson. “Every year, approximately 230 kids in Canada die from this disease.”
Wilson detailed that in the last week, she had been contacted by four families in the Hastings and Prince Edward Region whose children have been diagnosed with some type of cancer. Altogether, she states, that is five families in the area who have reached out to her for support since July.
Cancer that plagues children also plagues their families, with unending care demands and the arduous nature of treatment.
But, as Wilson notes, what is really challenging for children is the resulting isolation caused by immune suppression that goes hand in hand with childhood cancer.
“Short term effects are comprised of immune system suppression, nausea and hair loss (to name a few), but the problem is when they say 80 per cent survive cancer, of those, 70 per cent end up having lifelong health issues and over half will end up developing a secondary cancer,” Wilson said.
Furthermore, Wilson argues that some of the supposedly rare childhood cancers are actually quite visible.
“In the last 12 years in the Quinte Area, we have had eight kids diagnosed with osteosarcoma and only one survivor. For something that’s supposed to be rare…that is not rare,” argued Wilson.
Wilson believes that, on a governmental level, there needs to be more attention paid to childhood cancers, which include leukaemia, lymphomas, brain tumours and solid tumours.
“We all freak out if our phones are only at four per cent charged, but on average, three to five per cent is all the research funding allocated to childhood cancer by the government,” added Wilson. “All of the kids cancers share less than four per cent of government funding. In the past 45 years, only three new drugs have been developed for treatment of childhood cancers. The same treatment Terry Fox received is the same treatment my daughter received,” she said, poignantly.
With the obvious heartache that comes with childhood cancer, there is also a large financial burden, for which Wilson similarly describes a lack of governmental support.
Wilson states that one of her daughter’s drugs cost approximately $2,700. Though she only received this drug four times, had she survived, her daughter would have required it at least 10 more times. This is a drug that Wilson and her family had to pay for completely out of pocket.
“One quarter of families with kids receiving treatment for childhood cancer have lost more than 40 per cent of household income, while one third experience the threat of losing their homes or have issues affording their bills. Families of these kids incur, on average, $28,000 in the first three months spent in treatment. Many lose their jobs, as was the case with a local mother recently,” Wilson stated.
Apart from treatment costs, families must also pay for accommodation, in most cases, as well as travel costs.
Though as Wilson states, there are a few organizations that do help to shoulder the financial burden of childhood cancer, they are few and far between and, often, their aid is minimal.
In response to this, Wilson has created a group called Tears Mean Love, with the aim to provide support and financial assistance to local families. The group also helps to raise awareness and funds for our families facing childhood cancer.
“It is imperative the government understand the cost of childhood cancer. It takes a huge toll, not only on the child but also on the family,” stated Wilson.
Following Wilson’s heartfelt deputation, Councillor Phil Prinzen expressed his support for making September childhood cancer awareness month.
“Kids and cancer should never be in the same sentence,” said Prinzen.
The decision regarding this will remain with the Mayor for consideration. The deputation was received as a Councillor Jamie Forrester/Councillor Brad Nieman motion.
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