Young Wellington County boy customizing nasogastric tube covers for kids with cancer, other complications

A family from Wellington County is helping cancer patients stay positive with a unique take on naso-gastric tubes. CTV’s Spencer Turcotte reports.

A Wellington County family is making nasal tubes less intimidating.

Jordan Van Stee and her five-year-old son Kian, from Moorefield, Ont., began crafting nasogastric (NG) tube covers after he was diagnosed with leukemia in June 2023.

When CTV News went to interview Kian at his home, he had a stuffed Mickey Mouse toy with a nasogastric tube of its own.

Kian recently had his NG tube removed and is in remission, but he recalled what it was like having cancer.

“Not fun,” he said, with a sigh.

His mother, Jordan, took a long pause and agreed that the process was really difficult. She said even taking the necessary medicine wasn’t easy for Kian.

“We ended up with the NG tube because he also wasn’t eating properly so we needed it for feeds as well,” said Jordan.

The trouble is the tubes and accompanying bags get messy – especially for a young boy.

“They’re cancer kids. They get sick all the time. They’re super sweaty and you can’t keep wearing the same one day in and day out,” said Jordan.

The family was grateful for the NG tube bags provided by the hospital, but there are only so many bags to go around.

The ones in the hospital are also fastened to patients’ shirts with safety pins.

“That was his big thing was the safety pin, because you already get so many needles when you’re in the hospital to then have the safety pin off and on just freaked him out,” said Jordan.

So they began looking for an alternative. They came up with ‘Tubie Tough.’ It’s a non-profit charity that crafts custom nasogastric tube bags.

The small cloth bags are decked out in personal designs from Disney characters to superheroes. They also have a clip rather than a pin. It’s a way of giving patients their power back.

“So they feel the tubie is safe,” explained Kian. The ‘tubie’ is how he refers to the NG tube.

When other kids at the hospital saw the custom covers, they wanted Tubie Tough bags of their own.

“We started at McMaster because that’s our home hospital. We just started donating and it was really well-received by families,” said Jordan.

While Kian recently had his own NG tube removed, he and his mom are committed to keep making the bags.

That’s why donations are vital so they can cover the cost of materials and so they can eventually send the bags to hospitals across Canada.

“We [want] to make them for other people,” explained Kian.

The family will host its second annual Kian’s Skate for Childhood Cancer on Sept. 27 at the Drayton Arena. More information about it and Tubie Tough can be found here.

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