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Central Kitsap teen fights rare tumor

Rian Anderson, 19, with her dog Sheldon at home in Crosby. Anderson was diagnosed with a rare tumor in her spinal cord six years ago and will go to Johns Hopkins Hospital in Baltimore, Md. next month for surgery to hopefully provide her with some pain relief.  - Kristin Okinaka/staff photo
Rian Anderson, 19, with her dog Sheldon at home in Crosby. Anderson was diagnosed with a rare tumor in her spinal cord six years ago and will go to Johns Hopkins Hospital in Baltimore, Md. next month for surgery to hopefully provide her with some pain relief.
— image credit: Kristin Okinaka/staff photo

Rian Anderson likes to watch movies. She hangs out with her boyfriend. Sometimes she gets into fights with her younger sister. From afar, she seems like an average teenager. However, much of her days are consumed with being in physical pain — and the uncertainty of whether it will get better.

“I wanted to be a nurse,” said Anderson, 19, of Crosby in Central Kitsap. “I tried to be a nurse after my surgery but they said I couldn’t do it because I can’t lift people or change sheets.”

Anderson was diagnosed in 2005 with spinal cord astrocytoma, a rare kind of tumor that grows in her spinal cord. Doctors removed about 15 percent of the tumor and told her that the rest was inoperable and that she had about five years to live. That first surgery was in March 2005.

“It’s been six years. She’s living on borrowed time,” said Melinda Smieja, 41, Anderson’s mother, earlier this week. “I call her my little ninja warrior. She’s a fighter.”

The tumor has grown, leaving Anderson in pain in her neck, shoulders and back. In the past three months, it has intensified to the point where she cannot sleep lying flat. When her body is in that position, the spinal cord fluids cannot flow, which leads to her extreme discomfort, Smieja said. Local doctors said presently there is nothing they can do and told the family to wait. Smieja sent her daughter’s scans to a few specialists around the country and received a response from a neurosurgeon at Johns Hopkins Hospital in Baltimore, Md. He said he can operate on her — it won’t cure her, but will hopefully give her a better quality of life. The surgery is scheduled for April 7, Anderson’s 20th birthday.

“It’s just overwhelming with everything,” Anderson said. “It’s a whirlwind of everything going on.”

She often gets panic attacks, so Smieja will not tell her daughter when they have doctor visits until the day of, so as not to worry her more. Anderson has nearly 10 doctors including her primary care physician to a neurosurgeon and psychiatrist. She is taking 13 different medications right now, which do not help with the fatigue — she sleeps about 14 to 15 hours a day, said Smieja.

Astrocytomas are a type of abnormal tissue mass of the brain that originate from star-shaped brain cells called astrocytes, said Dr. Tony Quang, assistant professor of radiation oncology at the University of Washington. It’s estimated that about 1.5 in 100,000 people per year have spinal astrocytoma, and most of these cases are in young children with equal male and female prevalence, he said. Astrocytomas can grow in other parts of the central nervous system, like most parts of the brain.

“In the pediatric population, tumors in the spinal cord account for about 5 to 10 percent of all central nervous system tumors, so it is not very common,” Quang said. No causes for astrocytomas have been clearly identified, he added.

Before Anderson was diagnosed with spinal cord astrocytoma, she was a typical teenager, typical in the sense that she could go out and spend time with her friends. She could participate in gymnastics and swimming. Before her diagnosis she was part of the Olympic Gymnastics Center and Olympic Aquatic Club. Now her days are spent at home sleeping or watching TV.

It all began about a year before her diagnosis, when she started noticing that she couldn’t jump up and down like she used to. Then, she started to lag behind her fellow swimmers. Doctors summed them up as minor sports injuries, that she sprained her ankle and twisted her elbow. One day Anderson came home from school and told her mother that she couldn’t carry her books anymore.

An MRI scan revealed a huge lump in her spinal cord, beginning at the brain stem and running down. Smieja said that if it had been detected earlier, doctors would have probably been able to remove the entire tumor, but it had now been growing for some time. After the first surgery, a portion of the right side of her body became paralyzed — she cannot feel someone tapping her shoulder in certain spots. And she spent about a month in patient rehabilitation relearning how to walk, write her name and merely move her body. Sometimes she needs help buttoning her shirt and she cannot lift heavy items or open jars.

Anderson went back to Klahowya Secondary School, but it became too difficult, so her mother home-schooled her for ninth grade and she graduated from Central Kitsap Alternative West in 2008. The tumor was stable for about three years but then in August 2009, she was diagnosed with thyroid cancer and in January 2010 had surgery to remove it. Since then, she had been doing relatively well, but the pain is too much now.

Local doctors do not approve of Anderson getting the upcoming surgery because they say it is too risky and could completely paralyze her, Smieja said. The neurosurgeon at Johns Hopkins Hospital said he will untether some of the strings of the tumor that will provide some pain relief, she added.

Smieja and Anderson said together they decided to go through with the surgery because of their hope that the situation could improve.

Medicare will cover 80 percent of the cost, which leaves the family needing to cover more than an estimated $20,000, Smieja said. At a spaghetti feed fundraiser last month at the Crosby Community Club, Smieja was shocked by contributions, saying that one stranger stopped by and handed her a $20 bill at the door and said he couldn’t stay but “had to stop and help.”

“It’s tough to go against the doctors here,” Smieja said. “But, we’re trying to better her quality of life.”

Tiffany Reiselman, 28, describes her cousin as “bubbly” and the “same sweet girl she has always been.” She said her 4-year-old son adores Anderson and that whenever she knows they are coming to visit, she will make it a point to be awake when they arrive.

“She just has more pain than any one person should or could handle,” Reiselman said. “Recently she has more bad days than good days.”

On “bad days,” Anderson will spend most of the day sleeping. Smieja is a full-time caretaker and cooks and cleans for her daughter. The two of them will fly to the east coast next month for Anderson’s surgery.

Smieja’s father was born and raised in Crosby so their family has a history in the community. And with their support, they are taking things one day at a time, preparing for the surgery.

“I don’t want to live like this,” Anderson said. “We’re hoping for the best.”

 

Donating to Rian Anderson

Donations to help pay for Rian Anderson's surgery are being accepted at Key Bank under “Team Rian Anderson."

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