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Families & doctors share stories of ill and dying children on new website to help others

Click to play video: 'Families & doctors share stories of ill and dying children on new website to help others' Families & doctors share stories of ill and dying children on new website to help others
WATCH ABOVE: Families of a seriously ill or dying child are often faced with fear, anger and a lot of questions. Kendra Slugoski takes a look at a new website launched by medical teams and other parents who want to show families they're not alone – Oct 28, 2021

Arizona Cardinal-Burns was happy and loved.

The nine-year-old spent her final months with family, immersed in her Cree culture.

“Arizona was a very happy outgoing girl. She enjoyed dancing powwow,” said her mother, Sharice Cardinal. “She attended a lot of ceremony.”

In October 2020, Arizona was diagnosed with glioblastoma, an aggressive brain tumour.

Arizona Cardinal-Burns died from a brain tumor at just nine-years-old.

“It was the worst type of brain tumour that somebody could have,” said Cardinal.

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After a four month battle and with family by her side, Arizona passed away on Feb. 6, 2021.

Read more: Alberta family fundraising to build ceremonial lodge in honour of girl who loved her Indigenous culture

“I’m still processing it. It’s really tough. I find a lot of comfort in my culture, my family, the Stollery,” said Cardinal.

The ASSIST pediatric palliative care team at the Stollery Children’s Hospital helped Arizona and her family live out her days as best she could.

The team, said Cardinal, would deliver medication to their home in the middle of the night and during COVID-19 restrictions, made sure Arizona was able to continue spiritual healing with her family.

Tara Wren, nurse coordinator with the pediatric ASSIST team, has been working with families at their most devastating times for the past 15 years.

“It’s a very special role that I deeply cherish,” said Wren.

Wren and the team are by a child’s side to help with anything causing distress.

“So pain, irritability, family support just in coping through news they’ve received,” added Wren. “Walking with them each step of the way as we try to optimize whatever quality for their child.”

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Often times families will focus on a goal — planning for an event like Halloween or making it to the Christmas holidays.

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“Sometimes it might be something like a child who wants to get outside for a few minutes,” said Wren.

“How can we do that with everything that’s going on for the child, either in hospital or in their home?”

But Wren said away from the hospital, many family members need more — and more time process the unthinkable.

Wren pointed to a new website that could help families cope and offer “small comfort.”

Launched by The Canadian Virtual Hospice, the site CaringTogether.life is a free bilingual resource for families caring for a seriously ill or dying child. The website also provides information and support for pregnancy loss.

Pediatric palliative care specialists have contributed information and videos, along with families who have been through the palliative care journey.

Carla Garrett, whose son Xavier was diagnosed with a brain tumour when he was eight-months-old, shared her experience on CaringTogether.life.

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She wrote she “was in shock, confused and hurting” as her baby went for life-saving surgery. Garrett said the word palliative was difficult to digest — especially since her son was still going through treatment.

“Palliative care was for my grandma or someone else with end-stage cancer. Not a child, not my baby!”

Garrett wrote she came to realize her son wasn’t dying in that moment — and their journey was just beginning.

She said there are so many decisions and questions that “just aren’t topics you bring up at your weekly mom’s group. Nothing kills a room more quickly than talking about the plans for your child’s funeral or who you want to be there when they take their last breath.”

Xavier died shortly before his eight birthday.

Dr. Mary-Pat Schlosser, a pediatric physician and pediatric palliative care specialist at the Stollery, said “palliative care in children can be quite different than palliative care in adults.

“There are children that we will follow for decades sometimes because of their serious illness and their life-limiting illness but they aren’t necessarily at end-of-life.”

Schlosser said CaringTogether.life will allow families to get information whenever and wherever they need it.

“Things like how to talk to other people about the diagnosis and the illness. How to talk to your family about it,” Schlosser said. “How to respond to people offering help.”

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The site covers other difficult topics like end-of-life care and the impact on siblings.

“There are also some things that families, I think, are afraid to ask,” said Schlosser, “because it’s uncomfortable, it’s scary.

“Asking about what does the time of death look like? And what do I have to do afterwards?”

Some families, said Schlosser, want to have that information ahead of time to prepare for something so terrible.

There are also families in remote parts of Alberta or the Northwest Territories that choose to stay at home with their child.

CaringTogether.life will allow those families and medical teams to use the website as a source of trusted information.

Sharice Cardinal didn’t have access to the webspace during Arizona’s battle with terminal cancer, but she called the Stollery team “her website” since they answered her questions at any moment. Still, having a place to go online would have helped, said Cardinal, “even just getting simple information on something that you would text your doctor to ask.

Cardinal said her most cherished lesson came from Arizona.

“She showed me kindness. She showed me love. She showed me forgiveness, she showed me everything as a parent. They say we teach our kids but our kids are our teachers.”

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