The children’s hospice that helps terminally ill kids really live

On the reception desk, by the oak staircase, at Canuck Place Children’s Hospice rests a green Victorian lamp, which staff light when a child has just died—or is expected to die in the coming hours. This lets everyone in the house be mindful of the energy shift. A child’s death unleashes immeasurable grief for loved ones, but the families of kids who come to this innovative palliative care centre can take some solace in how their kids lived out their final days.

Michaela Evanow’s daughter, Florence Marigold, was a patient at Canuck Place. A sweet child with fawn brown eyes and a chin like a ripe peach, at just three-and-a-haf months old, she was diagnosed with Spinal Muscular Atrophy (SMA) type 1—a progressive neuromuscular disease with a terminal prognosis.

“To drink, go to the washroom, smile and even breathe, you need muscles, and SMA is a thief that takes these muscles away, bit by bit,” says Michaela. “We had so much hope she’d somehow be cured, but as Florence got weaker our denial and coping mechanisms no longer held us afloat and we knew we needed help.”

When Florence was 18 months old, her doctors put in a referral for her to receive care at Vancouver's Canuck Place—a historic red-brick mansion with blue cedar-shake siding, and the first free-standing paediatric hospice in North America.

“I was overwhelmed at first with the idea of a hospice,” says Michaela. “It meant acknowledging Florence didn’t just have special needs—she had a diagnosis that meant she wouldn’t emerge from childhood.” But Michaela says that not only did Canuck Place staff help her family navigate that terrifying terrain of preparing for their toddler’s death and learning to live with their grief, they made sure Florence experienced many of her most exciting moments at the hospice. It was there that she first met Santa face to face, that she had her face painted and that she held a fluffy chick. “When Florence was dying, there was nowhere else we wanted to be,” recalls Michaela. “We found strength there to make memories.”

Many parents are hesitant to make that first call to Canuck Place, fearing where it all leads. Most wouldn’t guess it might lead to an afternoon on a zip line for their child who uses a mobility device, or to a family showdown on the basketball court for their child who requires an oxygen tank.

Wearing his signature bowtie as he does his rounds of the nine in-patient beds, medical director Hal Siden explains that paediatric palliative care didn't exist until the 1990s, and even then it was all about pain management. He is proud of the holistic program that he and his colleagues have created at Canuck Place. “Our service is about life,” he says. “We can’t change these kids’ diagnoses, but we can change everything around it. Our thinking is: For these kids every day has risks, so how can we make each day great for them?”

Last year, Canuck Place managed 1,736 outpatient consultations, offering their services to families in their home or at the hospital, with 391 inpatient admissions. The clinical team manages care for more than 175 different diseases and conditions and administers over 150 medications. Some of the kids here have incurable illnesses; others have a condition with a cure, but treatment isn’t working.

Maureen LaForge’s daughter Angela was 18 when, on Christmas Eve, she was diagnosed with chordoma, a rare bone cancer that erupts along the spine and base of the skull. “Initially we didn’t want anything to do with a hospice—we were still fighting,” Maureen says. “We felt like we were in a hurricane and tornado and tsunami all at once.” She remembers that the moment she entered Canuck Place, the storm calmed. “You have an expectation of something clinical, but when you walk in, with the energy of the building and the smell of baking … it’s like coming home.”

The main-floor kitchen at Canuck Place is an oasis of normality, where parents chat, siblings tease, and everyone eats the famous chocolate chip cookies, which are available around the clock. Angela had developed trouble swallowing, and had stopped feeling comfortable eating in front of other people more than a year prior. “But right away, here, she sat down and had cookies, which I took as a sign I could finally relax,” says Maureen.

The top floor at Canuck Place holds private suites to accommodate four families. Parents needing time alone can retreat here to take a breath, and still watch from the window as their children spend time outdoors with volunteers.

Down the hall, there is a classroom, complete with computers and caterpillars in cocoons, where children carry on with their studies. “To see a child look beyond their medical challenges and enjoying learning and exploring fills my heart with joy,” says teacher Kay Lever.  Next door is an art room, where paintings of children under rainbows and trees line the walls, and a mirror holds the glittering signatures of the artists. Recreation therapist Gillian Lagambina clatters in with a rock tumbler to create memory pendants.

In the basement is a play therapy room, where therapists help children makes sense of what they’re going through. And there’s a music therapy room, full of instruments, as well as recording equipment to capture precious voices, singing and talking, before they’re lost. Kaiti Luyt’s four-year-old daughter, Layla, is non-verbal but has been doing music therapy here for two years, and she always breaks into a toothy grin when she enters this space. One day the therapists surprised Layla by learning and performing a few songs by The Lumineers, her favourite band. “Little acts like this show us that we’re loved,” Kaiti says.

Tucked away at the back of the basement is the sound-proofed “Volcano Room.” Padded with mats on floor and walls to look like a volcano erupting, it’s here that children can scream and pummel out their frustration at the unfairness of life. It’s also not uncommon to see a tearful parent emerge alone from that room.

Poppy, a senior golden retriever and therapy dog, wanders all four floors of the building, instinctively knowing who needs extra love that day. She will flop at the feet of a child in pain or sit next to an adult overcome with emotion.

There’s a mix of fun, realism and reverence throughout the house. On their way out to play, boisterous children glide past a mantelpiece that recently bereaved parents have decorated to celebrate their child's life. And on a wall by the play therapy room hangs a picture that a little girl who spent her final days here drew with colourful markers. In it, an airplane with “Rachel Air” on its side carries the family members and breakfast foods that this girl had wished could accompany her into death. “We’ve developed a care system that supports both hope and reality,” says CEO Margaret McNeil.

In 1999, Wendy and Terry Ostash’s daughter Alyssa went into hospital for a heart biopsy, but owing to an undiagnosed mitochondrial disease, her condition rapidly deteriorated. “She walked in a typical nine-year-old, but left on a ventilator and in a wheelchair,” Wendy says. Alyssa was given two weeks to live, but somehow she pulled through and continued going to Canuck Place for respite stays for the next four years. Staff helped Wendy and Terry with practical things like giving tube feeds, and they also helped Alyssa’s little sister, Jenna, process her sister’s illness.

Wendy says staff excel at helping protective parents see what their children are still capable of doing, and that enables kids to live their lives as fully as possible right to the end. She recalls that the Canuck Place nurses once took Alyssa off her ventilator and manually “bagged” her to help her breathe, so she could have a ride in a convertible. “They took her in her favourite nurse Shanna’s car and Alyssa had her hands up in the air,” recalls Wendy. It was a precious moment of freedom and joy before Alyssa died three days later.

“There’s a tendency to put kids with life-threatening illnesses on a shelf,” says recreational therapy coordinator Laura Fielding, “but I love showing families there are no limits.” Fielding has seen the smallest moments in rec therapy carry meaning. She recalls that one boy with restricted mobility was thrilled to experience a helicopter ride, while his mother was moved just by having the chance to sit up close to him, with no wheelchair in between them. Another child, who was brought to sit on the beach without his wheelchair, once asked Fielding, “Am I normal now?”

And whether casting the tiny footprints of a stillborn baby, or of soon-to-be-parted siblings holding hands, Fielding goes beyond making memories and helps families make physical mementoes of cherished children.

It’s clear the staff care deeply for each child. Janie Burns is a Scottish-born nurse whose expression flickers between warm smiles and furrow-browed concern. She speaks of each child as if they belonged to her own family. Having been at Canuck Place since it opened its doors, she now leads clinical rounds. She starts these off by lighting a candle for each “wee one” who has died in the hospice community that week. As the soft flames flicker, she names and describes each child. During the moment of silence that follows, staff lower their heads, some wiping away tears. Then the interdisciplinary team gets down to business with Burns, reviewing the file of each family currently in the hospice and discussing all their medical and emotional needs.

Bereavement counselling, which begins prior to loss, plays an important role in helping a family to piece back together their lives after losing a child. And the support of the hospice does not end when a child’s life does; families are followed for five years afterwards. Linda Wollschlaeger-Fischer, a woman with a somewhat apt halo of blonde curls, is in charge of spiritual care, which she describes as “an art: nuanced and hard to articulate.”

Wollschlaeger-Fischer respects all faiths and understandings. Whether she needs to call in a Sikh priest or an Indigenous Elder, or has to teach the parents of a dying child how to draw on inner resources they never dreamed they’d have to tap, Wollschlaeger-Fischer helps family members ride the waves of hope and grief. “To help someone in crisis who is raw—to hold that delicately and be present—is sacred,” she says.

Canuck Place becomes home to the greatest sorrow parents have ever known, yet remarkably many decide not to close the door on that chapter of their lives. They will return with their living children to visit, volunteer, reminisce, and reconnect with staff members, whom they now consider family.

Michaela’s daughter, Florence Marigold, died at Canuck Place on May 9, 2015, at three years of age. Yet Michaela today describes the hospice as “life giving.” And she decided that rather than visit a graveyard to remember Florence, the family would visit Canuck Place and plant marigolds there in her memory each May. The tiny yolk-coloured flowers sit in a small, sacred garden, glowing golden under washed-out Vancouver skies. “When we visit, we hear the familiar song of the chickadees in the trees,” Michaela says. “The same song that embraced us through the open window on the evening Florence died.”

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