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Parents Capture Daughter’s Experience With Brain Cancer

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CBS Minnesota (con't)

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By Lindsey Seavert, WCCO-TV

MINNEAPOLIS (WCCO) — For two well-known Minneapolis Star Tribune photographers, a picture is worth so much more than a thousand words. Liz Flores and David Joles, of Minneapolis, say it’s the only way to measure their love for their daughter during a time they found themselves in their toughest assignment yet.

“I never ever thought I would be on this side of the camera,” said Liz Flores.

Their daughter, Gracie Joles, was recently diagnosed with a rare type of brain tumor, just before her 8th birthday.

When you meet the second grader, it’s hard to believe she’s sick. Gracie all giggles and grins and endless energy, living her life on stage. When WCCO visited her home, she asked if she could sing her favorite Katy Perry song, “Firework”. She says she listened to the song every day to keep her spirits up during radiation.

“So my head could get better, my tumor. In December, I was diagnosed with a brain glioma on my medulla,” said Gracie. “I had to go radiation every day for six weeks with Saturdays and Sundays off. My last day was Feb. 17.”

The best part, Gracie says, “Now I can hang out with my friends and not have to miss a lot of school.”

On her last day of radiation at Abbott Northwestern Hospital, she came with a celebration in tow as dozens of family and friends looked on. And like always, Gracie smiled before she was strapped to the radiation table with a mask. She was ready for her close up.

Her mom, Liz Flores, and dad, David Joles are no longer married, but when learned that their youngest daughter was diagnosed with brain cancer, they coped together by taking photos.

“At first I was kind of hesitant; it was such a personal time. Then I thought maybe I should — maybe it will help the healing process,” said Flores.

Flores has extensively covered cancer, but says until now, she never fully understood the pain of the people she’s photographed.

“There are times I get really scared, I photographed this young mother one time,” said Flores. The young mother’s daughter was dying of cancer.

“It ended really sadly. When I heard about Gracie, that is the first image that popped into my mind … is seeing this mother weeping on her daughter’s bedside. That image just keeps going through my mind,” said Flores.

Fifteen years ago, David Joles was at the same hospital, capturing a little boy with a brain tumor.

“I was so torn between being the photographer and being a dad, and seeing the parents look at their son in so much pain. I remember at the time it was one of the more difficult assignments I have had,” said Joles.

That was until Gracie’s illness was spelled out in black and white. It began with a severe headache in November, and doctors soon found a fast-growing tumor in the medulla, which is the lowest part of her brain stem that controls functions such as heart operation and breathing. It is an area that makes it too dangerous to operate.

“That is the most frustrating part, they can’t get to it,” said Flores.

Flores told the doctors about Gracie’s headache, recent clumsiness, and onset of hiccups, and then remembers the long wait in the hospital room.

“Right then, my heart sunk and I knew there was something wrong,” said Flores. “At that moment your life just changes — kind of stops for a second.”

Dr. Patsa Sullivan, Gracie’s radiation oncologist at Abbott Northwestern said the only option is to treat Gracie from the outside in, and so far, Gracie has responded well to the treatment.

“She remained positive and as you can see, silly. She cheered up the entire department every time she comes in,” said Sullivan. “I see the patient’s parents going through this tough time, I wonder if that will happen to me, and I would be as strong as a lot of these parents are?”

“I have a tendency now to be drawn to stories more about the human struggle than ever before,” said Joles. “As journalists, we are taught to always capture the moment; good or bad. Sometimes it’s harder to take a picture. You feel like you are crossing a line that shouldn’t be crossed. Gracie having cancer has made me more empathetic. I try harder to look at subjects as people first.”

Some of the hardest days brought magical moments, like the day Gracie did a spontaneous cartwheel in a hospital hallway.

“I kind of sensed it would happen, and I fired off a few frames. Those are the things that make me smile when I think of her,” said Joles.

In another photo, Gracie flashed a peace sign heading into radiation.

“She put two fingers up and said peace out. She’s adamant about making things light, trying to make us smile and be happy,” said Joles.

“I like to say everything is going to be OK, because it is,” said Gracie.

Dr. Anne Bendel is Gracie’s pediatric oncologist at Children’s Hospitals and Clinics of Minnesota. She says Gracie’s tumor is so rare, doctors only see about one case in Minnesota every two years. Doctors officially call her tumor a “diffuse medullary glioma”.

“They make up less than 1 percent of brain tumors. So, 2,500 kids each year in the U.S. will be diagnosed with a brain tumor and less than 25 of those will have a diffuse medullary glioma,” said Bendel, who will be monitoring Gracie’s follow up visits and her next MRIs closely over the next few months.

“There is no proof that any further treatment at this time will help improve her prognosis and adding other treatments can have toxicity. We are hopeful she is cured from the radiation,” said Bendel.

A week after radiation, Gracie is still all giggles, and the power of her pictures is now revealed to far off places, thanks her CaringBridge page and Facebook.

A woman in Tampico, Mexico saw a photo of Gracie and called her home to say a prayer.

“This little town in this little corner of Mexico, they were all praying for Gracie, there was something special about her that was attracting this whole little town,” said Flores.

Her pictures have even reached Minnesota’s governor, and too many strangers to count. Flores and Joles have covered news with Gov. Mark Dayton and he attended a benefit where family and friends raised thousands of dollars for Gracie’s medical bills.

“I just want to thank all the people who are supporting me,” said Gracie. “It’s too much love.”

Gracie knows the best memories live in moments, and while life in this new lens can’t capture the future, her parents have made sure in their photos, Gracie is locked in an eternal embrace.

“I just believe God is good, and God is going to get us through this. And if it is God’s will for something else, then it’s God’s will. That is something I have to be strong for and prepared for,” said Flores.

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