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What do you do when you’re diagnosed with a rare form of Leiomyosarcoma at the tender age of 33? When your world is tipped upside down, your Doctors say you’ll be lucky to live for five more years, the odds are stacked against you and your entire sense of normal is shattered. How do you cope?

Today’s episode is a brilliantly hopeful conversation with Julie Rohr — mom, wife, writer, photographer, community advocate and intentional optimist.

As Julie shares her journey about a rare form of circumstance she’s staring down, she inspires all of us to find beauty in the struggle, humour in the hardships and to take hope that light CAN be found in the darkness. It’s all about the power of perspective.

Episode Quotes: 

  • You go from thinking you have all the time in the world, to realizing, actually, that, that none of us know really how much time we have. And that everything we’re doing is important. Every minute that we’re spending doing anything is important. —Julie Rohr
  • I’ve learned to find the good. And the good is that I’m soaking in every minute with my kids, I’m creating memories really intentionally and I’m saving important moments in my mind and writing them down and taking lots of pictures. Everything I do is intentional now, so that’s a gift. —Julie Rohr
  • My new normal is that I never assume my normal is going to stay that way. My new normal is being adaptable to the change. —Julie Rohr

Guest Bio:

Julie Rohr is a local mom, wife, writer, photographer and community advocate. Her family are the loves of her life, and she always enjoys spending time with her husband, David, and their two boys – Jacob, 11, and Max, 9. The family can often be found at events around the city, including lots of indoor and outdoor soccer games, festivals, and concerts. They have always been the type of family to see a need, and try to meet that need.

In 2013, Julie and her then four-year-old son Max launched a fundraising campaign to help raise money for a family they knew who had a mother battling brain cancer and a four-year-old daughter diagnosed with leukemia. Max loved to draw, and had drawn a series of monster pictures. By selling Max’s monster drawings, the four-week Buy A Monster to Fight A Monster campaign raised over $13,000, with half going to the family and half to cancer research. At the time, when asked why they wanted to do the campaign, Julie said it was because we’re all in this together, and it could just as easily have been her family to go through something like that.

In November of 2015, Julie herself was diagnosed with a rare disease called Leiomyosarcoma, a cancer of the soft tissue. Since that time, she has undergone three extensive surgeries to her abdomen, liver and lung, as well as two rounds of radiation and other ongoing treatments and scaUnfortunately, despite surgical interventions, the cancer continues to metastasize. Julie’s family is now faced with a difficult prognosis and pricey out-of-country treatments to give her the best chances of survival. The best trial that’s going on in North America right now is happening out of Seattle, where research doctors are combining a known chemotherapy drug with a new immunotherapy drug and seeing better results for LMS patients. This will mean substantial travelling for Julie, as well as out-of-pocket costs that are likely to be well over $100,000.

Mentioned In This Episode:

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

Contact:

To weigh in on the conversation … to ask a question … to offer insight … to share a story … or to suggest an upcoming guest for the Confronting Normal Podcast, please email Cindy or Renae below. They would love to hear from you!

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