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Giving Hope a Fighting Chance with the support of Runway to Hope: Evie’s story

July 23, 2014

Just over three months before she would be blowing out three candles on her birthday cake, Evie Tanner was diagnosed with cancer. Medulloblastoma, a highly malignant brain tumor, starts in the base of the skull and tends to spread to other parts of the brain and the spinal cord.

Evie is just one of 2,000 children who are diagnosed with medulloblastoma each year. Fortunately, Evie survived her battle with this disease. Twice.

Thanks to Runway to Hope and continued community support, Dr. Amy Smith, pediatric neuro-oncologist, and her colleagues were able to join the team at Arnold Palmer Hospital, allowing Evie and her family to stay at home in Orlando during her second round of treatment.

Unexpected Discovery

Jennifer Tanner, Evie’s mom, had mentioned to the family pediatrician that Evie had been experiencing problems with her balance. In order to rule out the worst-case scenario, their pediatrician scheduled a scan of Evie’s brain.

“I remember that day so clearly,” Jennifer explains. “I remember the neurosurgeons came in very quickly. I don’t even know where they were but they were with us immediately. They showed us the X-ray. It looked like a golf ball in Evie’s brain. I told them, ‘No, she can do all these things that other kids can’t do. That’s not what it is.’ I was trying to talk my way out of it .”

Evie was admitted and taken into surgery two days later to reduce the swelling and fluid on her brain. She came out of surgery perfectly, but three days later she lost the ability to speak, walk and move because the area that was operated on controls those functions.

Despite this setback that would require therapy to regain those functions, Evie and Jennifer headed to Shands Hospital at University of Florida to receive a bone marrow transplant. “That’s where Dr. Smith was at that time and we were so grateful for her,” Jennifer adds. Evie received high-dose chemotherapy at Arnold Palmer Hospital following treatment at Shands Hospital.

New Treatment, Different Outcomes

After about a year and a half of clean scans, in November of 2010, Dr. Smith noticed a small growth. Evie’s second brain surgery went well and the doctors believed that at the age of five, Evie could begin receiving radiation treatment. Knowing it was an aggressive approach and Evie could experience many side effects later in life, doctors were still confident that this was the best course of action to give her a chance at survivorship, yet again.

“It didn’t seem as bad as the first time,” Jennifer shares. “The radiation continues to work for a while afterwards and it wasn’t until about a year or two later that we really saw the developmental and cognitive effects of it. Right now, she looks like she’s five because it stopped her growth. The radiation destroyed her pituitary gland and thyroid gland’s ability to produce any further growth hormone.”

Hope at Home

Through a generous gift from Runway to Hope and the NeJame family, we were able to create a brain tumor program dedicated to children, teenagers and young adults who are diagnosed with brain and spinal cord tumors, that is led by Dr. Smith and her team.

“I was thrilled when Dr. Amy decided to come. She and her staff got Chris and me through this more than anyone,” Jennifer says. “Evie was one of the transition patients when she came over. Being at the dedication for the brain tumor unit was so amazing and so emotional.”

Helping Other families Through Runway to Hope

After two battles with medulloblastoma, the Tanner family is dedicated to making good out of this unthinkable experience. “It changes the course of everything,” Jennifer says. “Chris and I are doing everything we can to make something great come out of this.”

For the past three years, Evie has participated in the Runway to Hope Spring Fashion Soiree. The event features more than 100 incredible and brave children, all who are currently battling or have overcome their cancer. Modeling much more than clothing, these courageous children walk the runway arm in arm with one of our dozens of national and local celebrity escorts as they show off their truest beauty of all – their unwavering spirits. Part of the funds raised will go towards Runway to Hope’s $1 million pledge to Arnold Palmer Hospital.

Evie isn’t really into fashion and clothes, but she loves this event because she likes Mark and Josie NeJame, Runway to Hope founders, and being on the runway with them. “Getting to tell people ‘thank you’ is big to her,” Jennifer adds.

Mark and Josie are great supporters of Arnold Palmer Hospital and the brain tumor program. They support this cause because “there is a moral obligation to give back to others when one is able. Our two daughters, who are six and eight, are our most precious gifts,” Mark and Josie say. “To imagine them going through what these other kids and their families endure is almost unthinkable. We are in a position to make a difference, so we do. Brain tumors and brain cancer are especially devastating.”

Because of Runway to Hope and the Pediatric Brain Tumor Program at Arnold Palmer Hospital, more than three times as many patients have been able to be treated right in Central Florida.

“Bringing the money to Arnold Palmer is huge,” Jennifer comments. “To see the brain tumor unit and Dr. Smith being a beneficiary of that funding is great because in her hands many things are possible. My husband and I truly believe if anyone can find a cure for our kids, it is her.”

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