CORNWALL, Ontario – Little Kohen Paschek may be saddled with an incurable form of cancer – but the way he bombs around his west-end Cornwall home it sure looks like he is going to enjoy every minute of life.
Kohen has endured more in his two years than most adults contend with in a lifetime, having been diagnosed just last spring with an aggressive form of cancer that has attacked his brain and spinal column.
His parents Jessie McDonald and Karl Paschek have fought tooth and nail for their son, lobbying doctors to consider treatment for Kohen when the initial diagnosis was incredibly dire.
“They told us to prepare ourselves to begin to plan our son’s funeral,” said McDonald, stopping to stifle tears that are just below the surface. “But we said no.”
Karl quickly jumped on his phone and began Googling top neurosurgeons in Canada and as it turns out doctors at the Toronto Hospital for Sick Children were able to remove 90 per cent of a massive tumour that had taken up some 35 per cent of Kohen’s tiny skull.
The good news is that in combination with treatments like stem cell replacement and in spite of the initial prognosis of a quick passing, doctors say there is no evidence of disease in Kohen.
The bad news is the type of cancer he has, which includes what is known as a primitive neuroectodermal tumour, has a 98 per cent chance of returning within three to five years.
And treatment options have been all but used up.
“I wake up every morning, looking for something,” said Jessie, who examines her son’s eyes, vision and gate to see if he is exhibiting symptoms associated with a reoccurrence of brain cancer. “We live in utter fear waiting for something to come.”
The family highlighted their story at the recent Candlelighters gala in Cornwall, where McDonald shared the family’s odyssey publicly for the first time.
After hiding the diagnosis, in large part, from family and friends McDonald is now going public because she wants to share the plight of families grappling with a terminal illness – and fundraising efforts are taking place to add to the research being done on children like Kohen.
Because of the small number of cases involving young children like Kohen with the aggressive cancer he has, treatment options aren’t as varied as they might be for other children suffering with leukemia, as an example.
“I can’t believe we came that close to losing our son,” she said. “My son was treated with 1992 science. Many of these kids are a write-off.”
Indeed the type of cancer the family is battling is present in just a handful of cases of patients younger than 25 – and almost never for a child as young as Kohen.
The fight has left Jessie and her husband withered.
“I’m broken,” she said, once again fighting back tears. “It’s not just his trauma, but it’s the trauma of seeing all the other families, and parents who have lost their children.
“I can still see the doctor’s face when she walked up to us after he had his first MRI. She looked like she had seen a ghost. She told us she had never seen anything like it.”
Despite a large scar on the top of his head, Kohen shows few outward appearances of fighting cancer. He is kept home for the most part, to avoid contact with people so that he can avoid cold and the flu.
He plays with his sister, playfully smacks his mom with a toy, and is enthralled with strangers who bring things like shiny new cameras to his home.
But he’s still a sick little boy.
“Waking to our beautiful three-year-old son looking and behaving as normally as any other three-year-old little boy is just amazing,” said McDonald, who holds a special place in her heart for the doctors who saved her son. “It is all because of the care we received at the Hospital for Sick Children. Without the research that has been done in the stem cell field, we probably wouldn’t have our son here with us today.”
As a thank you, and in an effort to raise awareness, the family hosted a charity garage sale last weekend that brought in $5,765 for Meagan’s Walk – a Toronto agency that collects funds for research into childhood cancer-related illnesses.
Another event, Saturday April 30, will include a car wash and barbecue at The Brick in Cornwall.
The event runs from 9 a.m. to 3 p.m.
Also, local restaurant Eight Zero Zero has put together a special menu for patrons, known as ‘Kohen’s Menu’, for similar fundraising efforts. The family sells custom ribbons and pins as well.
