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SHS counselor fights brain tumor for past 11 years and pushes on

Photo Credit: COURTESY OF JENESSA ROSE - Following an all-school assembly themed 'The Ellen Show' to honor SHS counselor Jeneva Rose in her fight against brain cancer, she sits on a couch with her husband Tim and daughters Jazlyn (on her lap) and Jenessa along with Puddles, the University of Oregon mascot.When the new school year kicks off this month, probably no one at Sherwood High School will be happier to be back than counselor Jeneva Rose.

Rose, who was first diagnosed with brain cancer 11 years ago this month, is grateful that she is still alive to do the job she loves and raise her two daughters with her husband, Jim. A dancer for decades, she walks a little slower down the hallways these days due to paralysis on her left side, the result of a second brain surgery two years ago, but she is not giving up on life.

Rose, who was born in Bend and raised in Salem, performing with the dance team at Sprague High School as well as the University of Oregon, where she majored in journalism and public relations, found her way to counseling through a bit of a circuitous route.

She worked for three years as an admissions counselor at Western Oregon University in Monmouth, and after two years, “I started to realize that I wanted to be on the other side of the table and become a high school counselor,” Rose said.

Although virtually everyone in her family and her husband’s family had gone to UO, the school didn’t offer a master’s degree in counseling at the time, but Oregon State University did, and since Rose was living in Salem, she broke with tradition and got her degree there.

Rose started working at SHS in the fall of 2000, and with 730 students, SHS wasn’t exactly the small school that she had envisioned, but otherwise it was perfect. She also worked as the assistant dance team coach for two years and then as the cheerleading coach for another three years. “I love coaching,” Rose said.

In 2003 she started noticing a numbness in her left leg but kept up her tap dancing anyway. After the 2002-03 school year ended, Rose mentioned her leg while at a doctor’s appointment and was sent to a neurologist.

A couple of doctors and tests later, as Rose waited at Legacy Meridian Park Medical Center with her husband and parents, a doctor came in, asked Rose a few questions and said, “You have a brain tumor shaped like a finger in a fluid-filled cyst,” and he added, “It’s really, really bad.”

Since Rose’s family had already experienced her cousin’s death due to a brain tumor, everyone assumed it was a death sentence.

The doctor said that the next step was to drill a hole into her brain to do a biopsy, but luckily for Rose, because it was the start of the long Labor Day weekend, Meridian Park’s brain surgeon was out of town, and she was transferred by ambulance to Legacy Emanuel Medical Center.

There a trauma surgeon said the situation was not urgent and that he did not want to do a biopsy because air would get into the tumor, adding, “I want to go in once and take it out.”

He told her he had done a similar surgery two weeks earlier with a successful outcome and would assemble the same team, and he scheduled the surgery for the following Wednesday, which was the first day of school, but also recommended that Rose take her films “and get a second, third and fourth opinion.”

Rose went to SHS Principal Michelle DeBoard’s house to tell her in person that she wouldn’t be able to start the school year and had the surgery, where the doctor determined that on a scale of grades one to four, Rose’s tumor, a glioma, was a grade three.

Rose asked him, “Do people survive brain tumors?” and he said yes, but she didn’t want him to tell her the life expectancy.

“I was 29 at the time,” Rose said. “I had no kids, although we had been trying. I eventually found out I had a grade-three anaplastic astrocytoma.”

She had almost seven weeks of daily radiation and started taking a new chemotherapy drug called Temador, “which was just a pill I took at home for five days in a row and then had 23 days off. I started with a low dose during the radiation treatment. I took six weeks off from school, and after I came back, I finished the radiation.

“The effects of the chemo build up during the time you take it. I would start on Sunday, call in sick on Friday and come back Monday.”

Best of all, “my leg worked fine,” Rose said. “Right out of surgery, it worked fine, but during the radiation treatments, I needed a brace to walk. I had physical therapy and acupuncture after the radiation ended, and my leg returned to normal. I resumed tap dancing and took up Zumba, even becoming a certified instructor.”

Rose had regular MRIs, which all looked normal, and life got even better: Daughter Jenessa, now 7, was born in November 2006, and daughter Jazlyn, now 5, was born in August 2009.

But in the spring of 2012, Rose noticed that her left leg was not as coordinated as before. “I knew,” she said. “I had an MRI coming up over spring break, and sure enough, the tumor was back.”

Rose’s original neuro-oncologist, the only one in Oregon, had retired in the meantime, and she called her original surgeon to talk over options. He recommended a neuro-oncologist at the University of Washington in Seattle, who was the only one in that state, and that doctor recommended a surgeon who did the surgery.

The last day of work before Rose’s surgery was a parent-conference day, and she was surprised when one of her favorite students met her at the SHS front door and hugged her. As she walked in, staff, students and parents lined the hallway that had a red carpet down the middle and decorated luminaria lighting the way to the counseling center.

“Everyone clapped for me,” Rose said. “Everyone had kept it from me, and the students had to pay to decorate the luminaria, with the money going to Relay for Life.”

Rose’s surgeon had told her, “There is a 50/50 chance you will wake up from the surgery paralyzed on the left side, a condition called sensory motor syndrome, but it is temporary and will last from between six hours and 28 days.”

Indeed, Rose did wake up paralyzed on the left side and was given a choice of going to a rehab facility at UW or one in Portland, and she chose the local one.

However, Rose felt like she was treated like a stroke patient with little chance of recovery, and because she had been told that she would be fully back to normal in a month at the latest, she didn’t pay much attention to what she was being taught “about things I wouldn’t need to know after 28 days.”

Twenty-eight days came and went, and the paralysis remained. Rose never went back to the UW surgeon although she still sees the Washington neuro-oncologist, who doesn’t know why the paralysis didn’t go away.

“I did come back for a couple weeks at the end of the school year in 2012 if for nothing else than to see my students,” she said. “I was using a cane and had an escort.”

Rose hit a major depression that summer, sitting home unable to drive or take care of her kids or herself.

Photo Credit: COURTESY OF JENEVA ROSE - SHS counselor Jeneva Rose's family is all Ducks all the time, and even better than her office being a shrine to the University of Oregon was a personal visit from Puddles, the U of O mascot.“My kids were in daycare, and I finally decided, this is as good as it gets,” she said. “I couldn’t wait any more for the paralysis to go away. I needed to drive, to take care of myself. I read a book, ‘One-Handed in a Two-Handed World.’ And there are so many gadgets they make for one-handed people.

“I am now totally independent. I’m not depressed. I’m taking care of my kids and driving myself around. Do I wish I had my old life back? Yes, but I love my life now. I’m going to live like I’m going to be around forever.

“My disease can be terminal, but that would be a terrible way to live. The recurrence was a bigger hit because I had kids then. I found out later that the average life span is seven years, but I made it nine years before. Give me another nine.”

Rose has participated in some clinical trials and also got more radiation, but there is a lifetime limit on how much radiation people can get. She is currently getting chemical infusions once every two weeks for six months and has been on a new drug called Avastin for a year, which she will be on for the rest of her life.

Rose also is a candidate to take Temador again if the tumor starts to grow. “It’s still in my back pocket,” she said.

As if Rose had any doubts about how the SHS staff and students feel about her, she felt the love Feb. 28 this year when the entire staff and student body surprised her with an assembly in her honor.

She was escorted across the gymnasium floor to an Ellen DeGeneres Show “set” complete with couch, palm trees and backdrop. The SHS dance team performed; a huge banner saying, “We (Heart) Ms. Rose” signed by hundreds was brought out; and a surprise guest ran — or waddled — across the floor: The UO mascot Puddles the Duck, who joined Rose, her husband and kids on the couch.

Rose also learned the cheerleaders had held 50/50 raffles during football games and raised $1,300 for cancer research. “I donated $650 to the Portland Brain Tumor Walk and the other $650 to the Sherwood Relay for Life,” she said.

On July 27, Rose and her team, Ducks and Roses, took part in the 5K National Brain Tumor Society’s Portland Brain Tumor Walk, and she remains eager to tell her story.

“I hope people can learn from my experience and be inspired by my story,” she said. “I’m not shy.”

According to Jessica D’Amico, marketing communications manager for the National Brain Tumor Society, thousands of families in Oregon have been affected by brain tumors.

“In fact, nearly 700,000 Americans are currently living with a brain tumor,” she said. “There is no cure, and little progress has been made in finding new treatments in the last two decades. As patients, survivors, or caregivers, these local residents comprise a community of survival and hope.

“As Jeneva celebrates her 11th year as a brain tumor survivor, she wants to ensure no other families in Oregon have to go through what hers did. Jeneva’s story is inspiring to other parents and families in Sherwood who want to be around to see their children grow up. She also embodies what it means to never give up, and to live her life in spite of her disease.”

More information can be found at BrainTumorWalk.org/Portland.



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