At BC Children’s Hospital, Families Come First

November 5, 2009 at 12:01 am Leave a comment

Post 6 Families Come 1st - 5-Nov-09During Paige’s treatment at BC Children’s Hospital, her parents, brother Chase and sister Ashleigh kept her company around the clock. This constant care and support made all the difference to her.

So how do families like the Ropers find the time and energy to be at a sick child’s hospital bedside, especially when they have to travel several hours from home to get there? And how does Children’s Hospital ease the mental, physical and financial burden on tired moms and dads?

The story of Philip Tilley and his family provides some insights. Like Paige, Philip is also a cancer patient at BC Children’s Hospital. Unlike Paige, however, he lives in Kelowna, and his family had to travel to Vancouver to make sure he would get the care he needed.

Terra Scheer retells the Tilleys’ story in the Spring 2008 edition of BCCHF’s Speaking of Children magazine:

Philip Tilley

Philip Tilley

“One of the biggest challenges for our family was during Philip’s initial treatment, right after he was diagnosed,” remembers Danielle Tilley, whose son Philip was only three and a half when he was diagnosed with an aggressive form of childhood cancer.

“Our daughter, Margaret, was still nursing so she had to stay with me all the time. When she was mobile and bored it was really a challenge staying with both of my kids,” says Danielle.

When the Hospital was built in the 1980s, care philosophy didn’t include the patient’s family. Parents were told to leave their child at the Hospital and come back during visiting hours.

“Today, we know that children recover fast if mom or dad stays at the bedside,” says Sue Carruthers, president and CEO of BC Children’s Hospital Foundation. Yet shared rooms, built to house two or three children, don’t provide adequate or even appropriate conditions for a child and family’s mental and physical comfort.

“The hospital stays felt the longest when we stayed overnight for chemotherapy treatments,” recalls Danielle. “During the treatments Philip was often energetic and in good spirits, which was great, but because he was still in active treatment he needed to stay in the room.

“The challenge became, how do we entertain my kids in the room where we are also living with another family? This is made even harder when the other child in the room is a different age, or worse, feeling really sick,” Danielle explains. “You have to be respectful of their quiet time, but also keep an energetic three-year-old happy and distracted.”

With two patients often sharing a room there is little space for parents to stay with their scared and sick child.

“It’s really important that we have a facility that works for the kind of care kids need today,” says Carruthers. “Currently we’re putting Band-Aids on the Hospital’s needs. We’re doing renovations, taking down walls, making rooms private to control infection and improve the family experience, but then we end up with fewer rooms.”

In March 2007, one year after treatment, a mass was found during one of Philip’s regular checkups. His cancer had returned and he was placed on chemotherapy protocol that has him in treatment one week every month. Fortunately for the family, Philip’s oncologist was able to arrange for three of his four treatments to take place at Kelowna General Hospital.

“We love Children’s Hospital and feel the care is amazing, but it’s definitely easier on us when Philip receives treatment in Kelowna. It’s a tough day, but at the end we go home to a meal cooked by my husband, Chris. Our family time just doesn’t feel as disrupted,” says Danielle.

The goal for BC Children’s Hospital is to ensure families have the comforts of home and remain together. “If there is any silver lining in our experience, it’s that the family was really brought closer together. We realize how important our time is, and we make plans together,” says Danielle.

With content from Terra Scheer’s “A Healing Experience”, published in Speaking of Children’s Spring 2008 edition, pages 10-11.

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Entry filed under: At the Hospital, Paige. Tags: , , , , , , , , , , , , .

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