‘This is goodbye for now’: Edmonton’s Julie Rohr dies after hard-fought battle with rare cancer

A beloved Edmontonian who has been documenting her life with end-stage cancer has died. Carly Robinson speaks with Julie Rohr’s siblings about her impact on the city.

EDMONTON — An Edmontonian known for spreading joy, and love, while documenting her life with end-stage cancer, Julie Rohr, has died.

Rohr began battling a rare form of cancer, retroperitoneal leiomyosarcoma, in 2015.

Edmonton Mayor Don Iveson joined Julie’s family and closest friends outside the Roozen Family Hospice Centre on Thursday, to officially proclaim Sept. 13 to 19 “Julie Rohr Week” in Edmonton.

“If we all took this moment to challenge, to embody, even a small amount of Julie’s delightful spirit, we would all be so much better off,” said Iveson.

“She would have shaken her head and said, ‘You guys! What?! No. Not me. Little old me!” said Julie’s brother, Jeremy Rohr.

In Julie’s last week, countless celebrities, from Ryan Reynolds, to Colin Mochrie and Dan Levy sent Julie messages of love.

https://twitter.com/iamhannah_h/status/1437466253543698441

But before that, it was hundreds of tweets from everyday Edmontonians sending love to her, after hearing about her struggles around accessing care as COVID-19 floods the medical system.

“I could never believe that the story of living with cancer, for six years, when I didn’t know if I would make it more than one or two,” said Julie in a Sept. 7 interview with Ryan Jespersen. “It has been amazing to me that all of you have followed along on my journey, because you help lift me on days when it is really hard.”

Family, sharing the mother of two’s last message to the world on social media.

“The love that you feel for her, she wants that to be, not for her, she wants that be for the people in your community, in your circles,” said Marcie Rohr, Julie’s sister. “That you just really tell them, and find the person that is left out.”

Julie’s three younger siblings describe her as a “force to be reckoned with,” and remembered taking Julie for a walk in her neighbourhood before she moved into hospice.

“We just took her in a wheelchair for a final walk around the neighbourhood, and I’m not kidding when I say there were neighbours coming off their driveway, with tears in their eyes saying ‘Julie, thank you. I remember when you gave my son a ‘Best Snowman Award’ when we first moved in, and that made his day’. And that’s who Julie was, she just gave these random awards to random people,” said Heidi Griffin, Julie’s sister.

As Julie trends on Twitter, it’s clear she lifted up everyone around her.

A scholarship in her name has already been announced with fundraising underway.

Her siblings were there when Julie got the news, saying how huge an honour it was for the woman who always sought the truth to help others in their education.

And Julie, in who she was, wanted the focus to turn to the Roozen Family Hospice Centre that cared for her and her family in those final days.

A facility that focuses not just on end of life care, but the wrap-around supports for those preparing for loss.

“As the family members dealing with this tremendous loss, we can say first-hand the comfort we felt,” said Griffin.

“For anyone, it doesn’t matter if you have a viral Twitter video or not, that is not at all what matters. It’s the care, and the attention and the love,” said Marcie.

For the executive director of Pilgrims Hospice Society, which just re-opened the rebuilt facility in February, Monica Robson says the demand for the facility is so high they could open another three.

“I’m just grateful for everyone that has supported this great organization and helped us build this building and enable what we do, and I hope that the people who have been there since day one realize how much it has helped people like Julie, and others,“ said Robson.

Julie’s siblings know that their oldest sister will always be with them, but they won’t be able to fill her shoes alone.

“I think it’s up to the community to fill those shoes,” said Jeremy. “We as a family won’t be able to.”

Realizing as they feel the loss of their sister, the community is feeling the loss of a powerful advocate for love.

“You can actively seek out the positive,” said Jeremy. “Don’t hold back you’re encouragement to somebody. Don’t hold back your ‘I love you’s’. Because you never know when you are going to get a cancer diagnosis that might take your life any day.”

Details for a memorial will be coming at a later date, but family say Julie planned every last detail down to the pamphlets that will be handed out.

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