Jacob Frey, brother of Mary and Sarah Frey, battles a rare brain tumor for 10 years | by BETSY TAMPKE

‘Frey,’ Mr. David Frey repeats. ‘Ruth Frey, Jacob Frey, and David Frey.’

The airport clerk behind the counter searches the flight list but finds nothing – their name is not there. In an internal panic Ruth Frey wracks her brain. ‘Did we accidentally cancel our flight yesterday? Did the hospital cancel our flight? How are we going to get home?’

Besides this one, the next flight out of Turkey is in a week. It’s a little after 5:30 a.m. back home in Kansas City. Her daughters are probably still sleeping. The travelers have waited three weeks to go home and Ruth refuses to wait any longer.

Jacob Frey, older brother of junior Mary Frey and freshman Sarah Frey, battled a rare cancerous brain tumor for 10 years. His parents traveled with him across the country to receive a total of three brain surgeries from a world renowned neurosurgeon, but the tumor kept growing back. This summer, in their most extreme attempt to remove Jacob’s tumor, David, Ruth, and Jacob traveled to Istanbul, Turkey for three weeks to receive a brain surgery from second best neurosurgeon in the world.

A Mystery

It was 1999 and the 10-year-old Jacob was getting his first, of what would become a series of MRIs. They were searching for a tumor on his pituitary gland that would explain Jacob’s early puberty. The MRI showed unexpected results: Jacob’s pituitary gland was clean. However, his frontal lobe, the part of the brain that controls speech and function, had a spot on it.

Doctors initially thought the spot was a lesion, or according to David, ‘an abnormality of the brain that was not uncommon.’ Doctors said nothing could be done right away. They decided to monitor it and wait until it became a problem.

Five years went by and the tumor continued to grow. The Freys went to numerous doctors but not one could tell them what it was—at least not from MRIs. Several doctors urged the Freys, despite the risks, to let them perform a biopsy, a surgery in which they remove a piece of brain tissue for diagnostic study.

‘Why?’ Ruth remembers saying to the doctors. ‘Why do we go in and see what it is when your telling me that he might come out and he can’t walk and he can’t talk when your done? He is a perfectly normal child. Why would I let you cut him open?’

Waiting

Back at the airport, the language barrier that had been only a picket fence during the Frey’s time in Turkey suddenly becomes a brick wall. After a mixture of misunderstood Turkish and English words combined with hand gestures, the clerk says, ‘It’s okay.’ He allows David, Ruth, Jacob and the Turkish Airline employee pushing Jacob’s wheel chair to pass through the gate.

The employee pushing Jake’s  wheelchair spots a Starbucks and says, ‘Hungry? You know eat.”

Jacob stands up and goes into Starbucks with his parents. Each order a piece of cake and  David gets a cup of coffee. They finish their food and exit Starbucks to find that the wheel chair, and the airline employee, are gone.

Answers

The doctor the Freys were seeing at the University of Kansas Medical Center recommended that they see Dr. John Grant, a neurosurgeon from Northwestern University who was stationed at Children’s Mercy Hospital in Kansas City.

Grant took one look at the MRI.

‘Oh, this is an insular glioma,’ David remembers Grant saying. ‘Typically non-fatal, they’re slow growing and the guy who invented the surgery…is down in Arkansas and if you want a second opinion you can go see him.’

Relief flooded over Ruth, David and Jacob. Insular glioma.The mystery spot finally had a name.

The Freys visited  the insular glioma specialist, Dr. M. Gazi Yasargil, in Arkansas only for him to agree with everything Grant had said: they needed to wait for the tumor to become a problem before operating.

The tumor reached the size of a large egg while Jacob was in his junior year at  Rockhurst High School. Grant recommended an operation before the tumor started to affect Jacob’s brain function. Even though the 79-year-old Yasargil was voted neurosurgeon of the century, the Freys thought it was better to have the younger Grant perform the surgery.

Before the surgery, Jacob wasn’t nervous. Jacob was ready. He trusted Grant to know what he was doing, even if he had only performed this surgery three or four times before.

Grant spent six hours in surgery. Jacob had lost a lot of blood. Grant was in a rush, and without changing his shirt soaked with Jacob’s blood, he walked into the waiting room to give Ruth and David news on their son.

Waiting

The Freys reach their gate on time, only to discover that their flight is delayed for an hour and a half. Due to the missing wheel chair, they are in a rush to find a place that Jacob can rest. David scans the waiting area to find a seat. Ruth and David guide Jacob over to an empty chair. They sit down and do something familiar. They wait.

One Tenth

Grant did the best he could during the surgery, but unfortunately his best did not remove enough of the tumor to heal Jacob. Mary described this surgery as being more of a biopsy because Grant only removed one tenth of the tumor. According to Mary, at least 95 percent of an insular glioma needs to be removed to prevent regrowth.

It was inevitable. Jacob’s tumor would grow back, most likely larger than before.

Waiting

Ruth, David, and Jacob board their direct flight from Istanbul, Turkey to Chicago. When they reach their seats they find an airline blanket, a pillow, ear phones, tooth paste and socks. It is 11 p.m. Ruth takes a seat and waits for the plane to start moving.

The Inevitable

‘Mom I think I’m having a seizure,’ Jacob said to Ruth through the phone. ‘The whole right side of my body is numb.’

Jacob, now a senior, was on the last night of the camping trip he was supervising in order to have enough hours to achieve the Eagle’s Scout award, and the tumor came back.

‘And that was the beginning,’ Ruth said.

The seizure subsided, and when Jake got home they took him for another MRI. The tumor had doubled in size. It was too soon to operate, but the Freys were faced with a predicament.

‘Do you send him to college for his freshman year?” Ruth said. “Or do you not send him to college?’

Waiting

The airplane is about to take off. While tourists are catching their last views of Turkey, Ruth’s eyes are glued to the ceiling of the plane. The roof is shaking, ‘Oh my God,” Ruth thinks to herself. “This plane is going to disintegrate.”

Decisions
The Freys did send Jacob to college. In his freshman year at Kansas State University, Jacob was determined to have a normal life.

The amount of seizures Jacob experienced daily was mounting , but few realized what was happening. Seizures usually consisted of his face dropping a bit, little ticks, or experiencing a strange taste in his mouth, so they could sometimes go unnoticed by others.

Jacob went home one weekend to watch a NASCAR race with his family. After Jacob left, Ruth realized that she had seen three seizures–one for every hour he was home.

Ruth immediately called the neurologist, scheduled an appointment for the following week, took Jacob out of school and headed to Arkansas.

This time they would ask Yasargil, despite his age, operate on Jacob. Yasargil was insulted when he discovered the Freys allowed Grant to operate on Jacob first.

‘Why?’ David remembers Yasargil saying. ‘Why? None of these guys are good enough. They don’t have the skill. You know, some people could take violin lessons for 20 years and they’re okay, but other people are concert musicians.’

About a week later, Yasargil started to operate on Jacob. His efforts were undermined, however, when he found a staff infection, an infection that can eat away at bone and severely damage the brain, on the surface of Jacob’s  skull.
David and Ruth considered themselves blessed. The staff infection had stayed isolated. It had not spread and damaged bone, nor had it begun to eat away at Jacob’s brain.
‘I was never able to hit my head hard enough to make it spread,’ Jacob darkly joked. ‘It’s supposed to kill people in under two weeks. I hit my head all the time, and it never happened.’
After Jacob underwent an eight-week intravenous antibiotic treatment–one stint delivering antibiotics straight into his heart every four hours–he was ready for the third attempt to remove the tumor.
Jacob went under the knife again, and this time Yasargil was able to remove 80 percent of the tumor. The tumor might never grow back, and if so it would not be for another 10-15 years.

‘We were hopeful that it was done,’ David said. ‘That everything was done.’

And then, the tumor started to grow again.

Waiting
The plane does not disintegrate. The eight hour flight from Turkey to Chicago lands as planned. The Freys wait patiently as the flight attendant welcomes them to the United States and asks them to remain seated until the plane has come to a complete stop.
A wheelchair is waiting for Jacob as he exits the plane. The Freys make their way to the next flight gate and have an hour and a half before they can board the plane that will take them to Kansas City, finally home.

Walk the Line
After Jacob’s last surgery Yasargil gave the Freys specific instructions of what to do if the tumor ever grew back: the only person who could be trusted to operate was Dr. Ugur Ture in Istanbul, Turkey.
Earlier this year, over a period of six months, Jacob started having seizures again. The Freys met with Yasargil in St. Louis June 26 and discovered that the tumor was growing again.

Without hesitation the Freys decided to travel to Turkey.
‘When a world renowned surgeon tells you to go see a second world renowned surgeon, you pretty much don’t question it,” Ruth said.

David, Ruth and Jacob’s first days in Turkey seemed like those of a typical American tourist. They went sightseeing, shopped, and ate. But three days into their journey they checked Jacob into the hospital and doctors prepped him for surgery.

On Aug. 12 Jacob went into what he hoped would be his final surgery. For twelve hours David an Ruth waited as Ture pulled the tumor out a ‘strand’ at a time, walking a fine line between tumor and brain tissue.

Waiting

7:30 p.m. The flight from Chicago lands at the Kansas City International Airport. Impatiently, the Freys wait for the plane to stop moving. They are so close to home. The pilot shuts of the fasten your seat belt sign and the Freys stand up and start to exit the plane. They are minutes away from seeing their daughters, seconds away from touching them.

Results
Ture brought good news. He was able to successfully remove 97 percent of the tumor. Jacob was expected to make a full recovery. All that was left for the Freys to do was wait for Jacob to be strong enough to go back home.
Home
The walk from the plane to the terminal seems like an eternity. Ruth sees the tallest of the bunch, her brother Mr. Bill Mattli, first, who had stayed with the girls during their trip. Then  Sarah…Mary….Leah…Rachel. The daughters that were merely voices on the phone and faces on her computer screen for the past three weeks  are suddenly very real in front of her. The family immediatetly embraces each other, blocking human traffic in the terminal as an intertwining knot.
As David retrieves the luggage and Mattli gets the car, the need to make the final, short trek home unties the knot. The entire Frey family piles into their dark blue suburban. As the girls delve into every detail of their life that their parents and brother had missed, Mattli drives them home to their new, tumor-less life.