Bends in the road

Below, Doernbecher dad Jerris Marr shares his family’s incredible journey – and invites you to help make a difference in the lives of other patients and families.

Throughout life’s journey there are bends in the road that you never see coming.

July 2007. During a family vacation, we noticed that our 4-year-old daughter Faith’s back was not bending as it should; she frequently complained of pain. At one point, when lightly wrestling with her brother, she screamed in pain at light pressure in the same area.

August 2007. After multiple X-rays, MRIs, CT scans and visits with a myriad of doctors, we found ourselves facing an eight-hour surgery to remove a portion of a vertebra, due to a bony growth.

Entering the recovery room following the surgery was terrifying. Our job as parents is to protect our children. Here was our baby, in horrible pain, with an incision from her sternum to her waist, another from her belly button around her side to her spine and a third across her lower right rib cage where a rib was removed to help repair the vertebra. This was the first of four major back surgeries that she would have within the year.

September 2007. We had been home from the hospital just a few days when the doctor called and requested an immediate, in-person meeting. No information was provided – our hearts sank.

Upon arrival we were informed that detailed testing of the bony mass removed from Faith’s vertebra confirmed that she had low-grade bone cancer. Due to several factors, her situation was incredibly complex and unique, with no treatment protocol established.  

I’ll never forget looking at Faith, sitting there in a wheelchair after such an invasive surgery. Life had just skidded off the road and crashed in a heap of pain, uncertainty and tremendous fear.

We challenged our doctor to consider all possibilities – to fight, just as we were prepared to do to save our Faith. We agreed to outline our options and meet again in a few weeks to set a new course of action.

In the next five years, Faith underwent numerous surgeries, adult doses of chemotherapy and radiation. We received treatment from specialists in multiple care facilities in Portland and Boston.

April 2012. Our Faith was declared a SURVIVOR.

Faith is with us today because of the OHSU Doernbecher team. Throughout the journey, Doernbecher has been exceptional in all aspects. Regardless of a care team member’s role, they demonstrate a genuine warmth, compassion and commitment to help. We faced many unexpected challenges during Faith’s treatment. Some continue today. The staff at Doernbecher remain connected to Faith’s care and well-being, ensuring that she is receiving necessary ongoing treatments, even when she’s not in their direct care. They are not just her doctors; many have become family to us.

 

The OHSU Doernbecher Childhood Cancer Survivorship Program is a critical element of the comprehensive care of childhood cancer survivors. The physical, emotional and developmental challenges associated with not only the illness, but also as a result of the treatment, require ongoing care long after the primary treatment is completed.

Right now, the Survivorship Program has a wonderful “problem:” More children are long-term survivors of their cancer than ever before. Having experienced a greater than 200 percent increase in the number of visits per year since 2013, the clinic has inadequate financial resources to optimally support its current patients or to grow its program to meet the needs of its many future survivors.

On September 23, we kick off Survive 47.8, an event that will challenge a diverse group of athletes to navigate the Grand Canyon from the south rim to the north rim – and back – without stopping. This is 47.8 miles logged in extreme elevations.

Most people complete this challenge in two or three days, but we’ve challenged ourselves to complete it within 24 hours. The physical and emotional challenges will be incredibly difficult, but pale in comparison to what the children and their families face when fighting childhood cancers.

We step into the canyon with a goal to raise $1,000 per mile – $47,800 in total. All of the donations raised will go directly to the OHSU Doernbecher Childhood Cancer Survivorship Program. Please join us in reaching this goal. You can further explore our journey, upcoming fundraising events, donate directly and learn more about our inspiration at www.survive47-8.com.

I will never forget 2007, and the five years following it: watching my daughter suffer, hearing there was nothing I could do. Thanks to Doernbecher, I believe there is always something we can do as a community to continue to fight cancer.

Learn about upcoming Survive 47.8 fundraising events – including a wine tasting at Rallison Cellars in Sherwood on Sunday, July 31 – and more ways you can support Survive 47.8 efforts here.

 

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About the Author

Lisa McMahan is a social media coordinator working to discover and share stories at OHSU. Got a story idea? Connect with the team: socialmedia@ohsu.edu.
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