Tom's Story

Worse Than They Expected

The volleyball sailed toward him, and though it was well within his reach, Tom couldn't keep it in the air. The next shot was easier, but the next ball slipped past him again and dropped to the ground behind him. As his sister Amy watched his frustrated attempts, she began to notice a pattern: Tom seemed to have trouble whenever the ball came to his left side.

16-year-old Amy shared her observation with her dad, Jon, who assumed the problem was not serious. He began watching his son more closely though, noticing anytime he used his left hand, his movements were slow and seemed to require a good deal of concentration. Still, Tom's difficulties didn't seem altogether unusual.

"He's just a right-handed kid," Jon reasoned.

A concerned relative urged the family to consult a doctor, and they followed his advice. A few weeks after the volleyball incident, an exam at a community hospital brought horrifying news: their 11-year-old son had a brain tumor.

"Of course, it was a huge shock," Jon said. He and his wife, Jan, broke the news to Tom, and half an hour later had to leave for an already scheduled meeting at the church where Jon is pastor. The people of Chandler Evangelical Free Church quickly got behind the family.

"They gave us a lot of support," Jan said. After learning that Tom would need surgery, members began coordinating their efforts to prepare meals and provide transportation for Tom's sisters during his upcoming hospitalization.

Operating Around a Blind Corner

Tom was admitted to Phoenix Children's, where a neurosurgeon first ran tests to prepare for surgery. A PET Scan, relatively new technology shows where various functions are controlled within an individual's brain, brought a surprise. Most right-handed people have speech and language functions in the left side of their brain, but Tom's speech was in the right hemisphere - dangerously close to his tumor.

"That sure threw a monkey wrench in the works," the physician said. Under normal circumstances, he would have approached the tumor from the right side, but in Tom's case, that route would have damaged or destroyed his ability to speak and understand language. The only option was to approach the tumor from underneath, working upward - which essentially meant operating around a blind corner.

The surgery would be risky, the surgeon warned the family. Although he would take every precaution to avoid the brain's language areas, there was a possibility that Tom's ability to speak would be impaired. The motor skills on his left side could also be affected.

But Tom was relatively unconcerned, viewing the whole ordeal as an adventure.

"He was kind of hopping around the hospital" during the two days of tests that preceded his surgery, Jan said. He visited the hospital playroom and immersed himself in Nintendo during most of his spare moments. Although he was technically under-age, hospital staff allowed him to visit the Teen Room, where patients 12 and older come to play air hockey or Super Nintendo.

Aftereffects of Surgery

The aftereffects of surgery weren't nearly as enjoyable. Tom's left side was weak, his head hurt and he was swollen and nauseous for days. Cards came from all over the country, and someone brought him a mylar balloon with a joke printed on the front: "This is a get well balloon. It's filled with healium." Too sick to do much of anything, Tom occupied his time by staring at the balloon and trying to figure out the joke.

"I stared at it for weeks," he said. "I just didn't get it." Finally, his dad explained the pun to him.

Another Round of Surgery

Tom's parents were relieved to find their son's speech unimpaired, and to learn that the tumor was not malignant. But their ordeal was not over. The doctor had not been able to remove the tumor completely during the surgery, and a second operation would have to be considered.

The family had a difficult decision before them. Tom would have some permanent weakness on his left side from a second surgery and the doctor could not guarantee the tumor could be removed completely. To make matters worse, the couple knew Tom, still miserable from his first operation, was not at all ready to think about a repeat performance. But without a second surgery, their son likely would not survive to adulthood. The decision was one the couple knew they couldn't make alone.

"We prayed about it," said Jon. Gathering at Tom's bedside, the pastor and his wife asked that the right decision would be very clear to them. They looked up from the prayer to see the surgeon standing at the foot of the bed. "Well, I think we can get it all," he said simply. It was all the confirmation the family needed, and Tom was taken back into surgery an hour later.

The operation was a success. The surgeon was able to completely remove the tumor, and Tom didn't experience the swelling or nausea he had endured after his first surgery.

Rapid Improvement

He did have some loss of peripheral vision, along with considerable weakness on his left side that left him unable to walk during the first weeks after the operation. But with therapy five days a week, he is making rapid improvement and is expected to regain most of his ability. Just months after the surgery, he is able to run, play softball and ride his mountain bike.

"We felt like this was a phenomenal result," Tom's surgeon said.

The MacKinneys were impressed by the care they received at Phoenix Children's. Staff made sure Jan had a comfortable bed in Tom's room, they always welcomed visits from his sisters, Jill and Amy, and his friends. When she made observations about her son's reactions to various foods and medications, she was impressed that the medical staff paid attention to her suggestions.

"We very much realized we were an important part of the healing team," she said. "They really paid attention to what I said."

"It was a good experience, when you consider what we were all going through," Jon added.