Wellington County Family Creates Custom Covers for Cancer Kids

A family in Wellington County, Ontario, is transforming the experience of young cancer patients by creating customized nasogastric (NG) tube covers. After five-year-old Kian Van Stee was diagnosed with leukemia in June 2023, his mother, Jordan Van Stee, sought to make the medical equipment less intimidating for her son and other children facing similar challenges.

During a recent interview at their home in Moorefield, Kian, who has since gone into remission and had his NG tube removed, shared his memories of living with cancer. “Not fun,” he said simply, illustrating the difficult journey he has faced. Jordan echoed his sentiments, noting the challenges Kian encountered, particularly with medication and nutrition. “We ended up with the NG tube because he also wasn’t eating properly, so we needed it for feeds as well,” she explained.

The experience of using NG tubes can be daunting for young patients. Jordan highlighted the issues with the tubes and their associated bags, which can become messy and uncomfortable. “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,” she said. Although they appreciated the NG tube bags provided by the hospital, Jordan pointed out that the limited supply and the use of safety pins to attach them to clothing were significant concerns. “That was his big thing was the safety pin. You already get so many needles when you’re in the hospital, so to have the safety pin off and on just freaked him out,” she recalled.

In response, the Van Stee family founded Tubie Tough, a non-profit charity dedicated to creating custom NG tube bags. These small, cloth bags feature vibrant designs that include popular characters from Disney and superheroes. Unlike traditional bags, Tubie Tough uses clips instead of pins, which Jordan believes empowers young patients. “So they feel the tubie is safe,” Kian noted, referring to the NG tube affectionately as a “tubie.”

The initiative quickly gained traction at McMaster Children’s Hospital, where Kian received treatment. “We just started donating, and it was really well-received by families,” Jordan said, emphasizing their desire to help others facing similar struggles.

Although Kian has recently had his NG tube removed, both he and his mother remain dedicated to producing these bags. They rely on donations to cover material costs and ultimately aim to distribute the bags to hospitals across Canada. “We want to make them for other people,” Kian expressed.

To support their efforts, the family is hosting the second annual Kian’s Skate for Childhood Cancer event on September 27, 2023, at the Drayton Arena. This fundraiser will help sustain their mission and provide more families with the comfort and empowerment that Tubie Tough aims to deliver.

For more information about Tubie Tough or to get involved, individuals can reach out via email at [email protected]. The Van Stee family’s initiative is a heartfelt reminder of how creativity and compassion can make a significant difference in the lives of children battling serious health challenges.