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Reluctantly extraordinary

One senior’s wish for a normal life

Staff writer

Drew Knolla downplays his bout with brain cancer as much as he can. He said he was never sick; a chemotherapy drug may have sapped his energy and forced his hair to fall out but those were only side effects.

He said spending nearly three months in St. Jude Children’s Research Hospital in Memphis was one of the best times of his life. He was 10 years old at the time. Today Knolla is about to begin his senior year at Marion High School at 18.

“It was two and half months of amazing,” Knolla said.

Knolla remembers going to the Memphis Zoo and Graceland. Knolla fondly recalls going to Grizzlies games. He rooted for his favorite basketball player, Shane Battier, in person.

The happiness Knolla remembers from this time is genuine, but it is only part of the story. The other memories are things he chooses to seldom ponder.

Knolla was affected by the diagnosis from his ophthalmologist William Beck in Newton, even though he did not react with a rush of emotions. He was overwhelmed and unsure of what to feel when he learned he had a tumor, a two-inch disk, near his left optic nerve.

“My mom and dad freaked out,” Knolla said.

The tumor took six weeks to diagnose. Medical professionals in Wichita did not know why the 10-year-old was suffering from headaches so severe that they caused Knolla to vomit. Originally, they thought it was just a problem with his eyes; doctors recommended glasses.

The worst of the headaches occurred in January 2004. Knolla started receiving treatment in Wichita before transferring to St. Jude in March.

“For a few months it was really bad,” Knolla said.

The diagnosis was that Knolla’s tumor combined two types of malignant cancer — one found only in children, the other only in adults. The doctors at St. Jude told the Knollas they had only seen this occur in children twice in the last 50 years.

Doctors in Wichita gave Knolla only a 5 percent chance to live, a fact he learned just two years ago.

“I was shocked; it didn’t seem that bad,” Knolla said.

Knolla went underwent two operations at St. Jude. He could barely move for three or four days after surgery.

He was also given a new type of chemotherapy drug he took orally. The drug was effective; he did not experiencing the stomach pains he saw his fellow patients go through at St. Jude. Some days he would feel fatigued and only want to sleep, but that was one of two side effects.

The other effect was hair loss, which he experienced while taking a shower. He remembers his four brothers shaving their heads in an attempt to provide comfort in a shared experience.

Knolla was not always supported by his brothers. He said one of his younger brothers became jealous of the attention he received of the fact that Knolla was constantly receiving toys and trinkets, some of which he gave away to his brothers.

As a brain cancer patient at St. Jude, Knolla received many gifts because the children’s hospital focuses on children with the worst cases of cancer.

“Drew didn’t want the things they were giving him,” his mother, Jennifer Lane, said.

He wanted to be treated like every other kid.

Two of Knolla’s friends were especially worried about him — Sam Stika and Caroline Collett. Stika took the news the hardest, Lane recalls. Stika remembers calling Knolla from the school office to check on her friend in Memphis.

As much as he wanted to be a normal kid, living in St. Jude made that impossible.

“There’s a lot of death there,” Knolla said.

While Knolla’s health improved he watched his friends in the hospital – kids with brain cancer or leukemia – deteriorate. While Knolla did not suffer pain from his treatment, he saw every ounce of agony on his friends’ faces, including stomach pain that left them incapacitated.

One of Knolla’s friends was Hayden Moore from Virginia. Knolla met the 8-year-old the first day at the hospital and they watched “The Lion King” together. Knolla would sing Whiskey Lullaby, a song that always played in one of the treatment rooms at the hospital, because it calmed Hayden down when he was in pain.

Days after his ninth birthday, Hayden died in 2005 from brain cancer.

“Most, if not all, of them are dead,” Knolla said of his friends from the hospital.

Knolla could not go back to being a normal kid because he was the aberration. At first, he received attention from the doctors because he was a success story in a place where tragedy is an everyday occurrence.

“It was just a part of my life,” Knolla said. “It was just an obstacle I had to overcome.”

Slowly, Knolla needed less and less treatment. He left St. Jude’s in May 2004. He went from going back to Memphis every month, to every three months, to every six months, to once a year. He has been told that brain cancers are never truly in remission

While he has the physical reminders of the cancer – a drop in vision from 10/20 to 70/20 and a complete loss of peripheral vision in his left eye – he also carries the burden of being a survivor. Although he said it is a topic he tries ardently to avoid thinking about, the pressure of being a survivor is a burden, he feels he has to live up to the expectation of a second chance at life. He is frequently asked if he will commit his life to medicine because he is been around it his whole life.

“I don’t want to be the person to tell them their kid was not going to live,” Knolla said. “Being a doctor is a chance of not being able to help someone.”

Knolla did not ask to be special and his plans are ordinary. He wants to graduate from MHS and go onto Emporia State to become a teacher, likely a high school teacher.

But, like it or not, Knolla possesses a perspective on life that is beyond his years. When asked about his friends at the hospital, he said he was glad they were no longer suffering. Wishing they were alive seemed selfish.

“They were just really happy to be alive at the time,” Knolla said.

Recently he attended a camp in Kansas City for cancer survivors. Knolla said he stood out because many of the other campers were too young to remember their experiences; Knolla remembers everything. He heard many amazing stories at the camp, but he never dropped his jaw in wonder.

“It’s all extraordinary, but it’s just people,” Knolla said.

Last modified Aug. 18, 2011

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