My son, Maguire, is 8 years old.
A mop of chestnut brown hair tops his head. He likes to swirl it around and proclaim “Rock star!”
Maguire has nothing to do with this story. Yet he has everything to do with its impact on me.
I spent a day at Akron Children’s Hospital for the program “Children’s Up-Close.” The program puts professionals into the hospital’s activities for one day — to witness its operations up close.
When they say up close, it’s as close as you are right now to your morning paper or computer screen.
I was partnered with Dr. Henry Bartkowski, director of pediatric neurosurgery.
Kids with severe head injuries from falls, crashes, sports or by other means are under his care. He also performs the delicate surgeries when children have brain tumors.
On this October day, Dr. Bart, as he’s called by his staff, is working on a tumor.
He’s been at this business for years. He talks about the surgical process the way most of us might discuss tonight’s dinner plans.
Kids come in, he explains, and he gets into the brain area, finds the mass, and gets it out. The kids go on to live regular lives. That’s how it works for most of the kids, he said.
Today’s patient is Josh Metzger — an 8-year-old from Barberton — just west of Akron.
A mop of chestnut brown hair tops his head, just like Maguire’s — it’s even the same cut.
Josh is not like most of the kids.
This will be Josh’s last Christmas.
‘Finding Nemo’ meets
Akron Children’s halls are part hospital, part elementary school.
Artwork, bright colors, knickknacks — you could easily think you walked onto the set of “Finding Nemo.”
Dr. Bart’s office workspace is no different. Phil Collins serenades him from an iPod sound system that fills the room with a string of rock hits from the ’80s and ’90s.
“I plan all the cases very carefully,” said Bartkowski about the surgery setting. “Once we have a plan, we try to make it as calm in the surgery room as possible.”
All the equipment imaginable fills the surgery room. Two large flat-screen TV screens on opposite walls project images from two cameras — one that is perched above the operating table and one that is attached to Dr. Bart’s head gear.
Tending to all of this is a team of staffers — 10 or so — rotating in, out and around the room, each with a defined role. There’s an occasional request or directive from Dr. Bart; otherwise the team moves silently — like a surgical ballet.
In the center of all of this is a sea of blue hospital linens. They canopy wires, wheels and a bed.
Only Josh’s foot — barely peeking out from the sheets, tiny and toylike — is evidence of the humanity at the center of this orderly production.
There are the beeps and buzzes of machines. There is the business of Dr. Bart and his team. There are the soothing sounds of Phil Collins.
But mostly, there is Josh.
Mom’s right-hand man
Josh is the middle child of Monica Metzger-Labriola. All boys, they range from 3 to 10.
And Josh, in the middle, is her right-hand man.
“He’s a little trooper. He would yell at his brothers about cleaning up around the house. He’s the one asking his brothers about respect for mom.”
From her Barberton home, she talks with unbelievable poise for a mom readying her family, herself and her son for his certain fate.
“He’s an amazing little boy with incredible strength. He knows he’s sick. He hopes to get better. But he knows. He’s the one who tells me ‘Mom — I’m dying.’”
Football, baseball and basketball were Josh’s staples. It was at an October football game when his symptoms first showed.
“He went down hard on a play — real hard. I was watching him for a concussion,” she said.
They went on a family trip that weekend, and she noticed Josh tilting his head sideways when he looked at her. One eye would blink four times to the other eye’s single blink. Muscle ticks started in his arms.
That Tuesday, they went to the emergency room, which led to an MRI exam on Wednesday, which led to surgery with Dr. Bart Thursday.
In a week, Monica went from cheering for Josh at football to cheering for Josh to live.
Going into the brain
Josh’s tumor is the size of a golf ball. It’s in his brain stem — or “brain central” as Monica says.
On the day I was there, Dr. Bart’s staff had other patients, including a girl with severe neck pain from whiplash caused by a car wreck. But Josh was on everyone’s mind.
“It’s a bad tumor in a bad place,” said Dr. Bart.
Though the X-rays told the staff a lot, Bartkowski said surgery and a biopsy are necessary.
“Being able to explain more thoroughly to the family the situation is better than saying ‘Let’s see how things go,’” Dr. Bart said.
Going into the brain is a process that leaves a spectator speechless.
It was about four hours to get from the scalp to Josh’s brain stem.
Dr. Bart pulls back the tiniest quantities of brain matter — just bits at a time — parting the cerebellum section of the brain. Each part of the brain that is parted is secured by tiny sutures and white cloth strips.
It appears similar to digging a hole in the sand — trying to dig deeper while ensuring each grain of sand stays out as you work your way down.
This is repeated until eventually the brightest of bright white you may ever see appears.
It’s the brain stem.
You can’t cry
Slicing open the brain stem, Dr. Bart removes part of the tumor for testing.
The samples are placed in capsules and expedited to another part of the hospital. Dr. Bart said it should take about 20 minutes to learn the results — and ultimately Josh’s life expectancy.
With Josh’s brain stem open and his tumor there, Dr. Bart begins removing parts of it.
“I can’t do too much because of its location,” he said, indicating that a wrong surgical step inside the brain stem can do more damage than the tumor itself.
There’s no known cause for tumors, Dr. Bart said. Some cancer forms are genetic. Other tumors, such as Josh’s, just happen.
What is known is that most tumors in children occur near the brain.
The majority of pediatric tumor removals go well, he said. Akron has had 40 cases this year. Of those, only Josh’s has this fate.
Based on Josh’s quick-developing symptoms, Dr. Bart reasons that the tumor was likely not present as recently as this summer.
On schedule, the biopsy results are back. It’s essentially three words: high-grade cancer.
For about 10 seconds, the medical staff become moms and dads.
Maybe it was three seconds; it may have been three minutes. Things just stopped.
Our eyes connect with one another.
Our expressions sag.
Not a word is spoken.
A deep breath is taken, and medicine begins again.
After Josh’s head is sewn up, it’s time for Dr. Bart to tell the family.
I’m invited along. I can’t do it.
Hardened newspaper guy. Fearless hockey player. Hyper coach of 8-year-olds.
None of that preps you for an 8-year-old’s death sentence.
“There’s no crying in front of the family,” Dr. Bart says about the rule he has with his staff. “If you can’t not cry, then don’t see the family.”
It’s not cold, he said. It’s just right.
“We all feel empathy for the families. I just don’t think it’s very supportive for parents if a surgeon or nurse comes in, and they are crying or are beyond sad. There are other people in the hospital who specialize in the consoling process. [Our] role is to be supportive and positive.”
God makes special people
“Months to live” in October has now become weeks, said Monica.
Josh is now wheelchair-bound and weaker by the day.
“We canceled his radiation,” Monica said. “It was just leading to other complications. We’re just enjoying every minute that we can.”
They just returned from a trip to Walt Disney World in Florida provided by Wishes Can Happen Inc. They received tickets to the Cleveland Cavaliers and met LeBron James. They went to a Browns game and met players.
“Every day, we make it fun for him,” she said. His brothers are aware of the dwindling days.
The family is taking plenty of photos and videos. Monica said they want to be able to talk about Josh to future friends and family who will never meet him.
The kids’ school and the hospital’s family care team have been exceptional, she said.
The school had a fundraiser for the family recently, and it was sold out before the tickets were even printed, Monica said.
“I couldn’t bring myself to the microphone to say anything,” Monica said. “But Josh could. He has a heart of gold.”
Tears aren’t hidden as Monica recites what a friend told her.
“The sick children are the special ones, my friend said. They’re born special — with a special heart, like they know they will go through something significant. And God makes them special.”
Todd Franko is editor of The Vindicator.