Sam Lee smiled less. Or maybe his lips just weren't curling up at the edges anymore. When the 2-year-old laughed, it sounded odd. His dark chocolate eyes seemed unfocused.
If you want to help Sam's family or follow his story, go to rally.org/support samlee
Or were they imagining it?
Maybe it was Ollier disease, a rare skeletal disorder Sam was diagnosed with at 10 months. He had undergone several surgeries, including one a month earlier, to correct orthopedic problems. Could he still be recovering from that?
Or maybe he was out of sorts. He and his parents had just moved to their new James Island home, and Sam was about to become a big brother.
In weeks, he would share his world with newborn twin sisters.
But then Sam's eyes crossed. He began to drool.
Mike Lee, a College of Charleston communications professor, spent last summer home with Sam. His wife, Erin Benson, weathered a pregnancy with twins due Aug. 15.
At 33 weeks into her pregnancy, Erin noticed a rash. Her blood pressure was elevated, a symptom of pre-eclampsia. It could lead to severe complications for mom and babies.
Erin was hospitalized at MUSC, perhaps to deliver prematurely.
The next day, Sam's eyes looked crossed.
As Erin, who analyzed data at Blackbaud before her pregnancy, pondered it all, the clues connected into a horrific possibility. Sam had been suffering night terrors. His smile, his eyes, the drooling.
Dreams, involuntary movements, swallowing. All originate in the pons, an area of the brainstem that controls those most basic, vital functions such as breathing.
"He needs an MRI today," Erin demanded.
Mike rushed home to whisk Sam to his pediatrician, who in turn sent the toddler to MUSC for an MRI.
It was July 26, a Friday.
Sam was admitted to a room on the seventh floor. As Mike approached, dread filled him. Less than a year earlier, he and Erin had endured three horrific nights there. It was a big room with two couches where they slept when a doctor broke Sam's femur to reset it due to Ollier disease complications. After surgery, Sam arrived in this very room, wrapped in a chest-to-toes cast, enduring such pain that Erin thought he was suffering seizures.
Back then, it felt like the worst thing that could happen to Sam.
Around 7 or 8 p.m. that Friday, a pediatrician, a stranger, walked into that room and ushered them into a far more terrifying nightmare. Erin, hugely pregnant and tense, had been wheeled up from her own room.
"The MRI results are in."
The man paused.
"They found an anomaly."
Sam had a tumor in his brain.
"It is fairly large."
A specialist would come the next day to answer their questions.
Meanwhile, Sam would go immediately on Decadron, a corticosteroid, to reduce swelling in his brain. Later, Mike would call it the devil's drug.
Erin summoned an army of friends and family poised to celebrate the birth of twins and wheeled numbly back to her hospital room.
Mike lay down with his 2-year-old son and sobbed.
As the unending hours of darkness ticked by and Saturday's sun rose, he and Erin grew increasingly furious waiting with their tornado of unanswered questions, namely: Was Sam dying?
Dr. Amy-Lee Bredlau, director of MUSC's Pediatric Brain Tumor Program, arrived midday Saturday with answers.
Sam had an aggressive tumor called a diffuse intrinsic pontine glioma. They grow in the brainstem, their tendrils infiltrating critical nerves. They cannot be removed. Or cured.
Children with DIPG tumors typically live less than a year after diagnosis, although the youngest ones like Sam tend to live slightly longer.
Sam would begin outpatient radiation and chemotherapy that could shrink the tumor temporarily.
His parents would meet hospice staff.
Ten days after Mike and Erin were told their son would die, their twin daughters were born.
Ada and Mae arrived Aug. 6.
"Their delivery was wretched," Erin said. Catatonic through the C-section, she lay weak and wracked with pain.
Mike held Ada up to his wife's face, but the more he held his new daughter, the more he mourned for his son.
Mae was sent to the highest-level neo-natal ICU. Her red blood cell counts were dangerously low. Fragile and pale, almost translucent, she needed a blood transfusion.
Ada, whose red blood cell counts were high, settled into a neo-natal nursery, near Erin's room.
Turned out, the twins are identical. Ada had been draining blood and nourishment from Mae. They would be OK.
From her room, Erin pumped breast milk to feed them.
"But I didn't want to feed any babies," Erin recalled. "I wanted to go see my son."
Mike walked the halls of MUSC from one room to another, then drove home and back for Sam's daily outpatient radiation treatments.
The toddler continued taking Decadron, which eased the swelling in his brain but left him enraged, screaming in frustration one minute, ravenous the next, inconsolable always, like acid in the gaping wound of his parents' terror.
When Sam went home, Mike struggled to manage the toddler's complex medication cocktail, including steroids and chemo pills.
Sam's face swelled unrecognizably. He binged and languished in front of the TV. His wide brown eyes remained crossed.
Then, his thick auburn hair fell out in clumps, leaving the pale skin of an old man's bald spot on top.
Erin lost it. She and Sam share the same thick, wavy hair. It felt so unfair that he should lose his, that anyone who saw him could tell something is wrong. That they might stare.
Or ask questions.
She summoned a hairstylist aunt to cut her curls short too.
As it fell into dark mounds on their kitchen floor, the doorbell rang. It was one of Mike's many College of Charleston colleagues who brought meals, this one especially lavish.
The woman stepped over a sea of hair to deliver it.
Victories came slowly. Ada arrived home a week after her birth. Two weeks later, Mae did too. Sam asked to hold them.
Soon, he completed six weeks of radiation.
An MRI showed that his tumor shrunk 70 percent. They had hoped for 80 or more.
Still, it was an improvement.
With that, Sam's medical treatment ended.
His parents don't want him to suffer through experimental treatments that haven't proven effective but could harm his quality of life.
They wanted Sam to live, however long. But how should they fill such precious time?
"Let's do everything and go everywhere," they decided.
Erin and Mike - and Sam, Ada and Mae - hit the road.
They will give Sam as many life experiences as possible. They will cram years into the coming months. They will visit loved ones and see dinosaurs and sharks and penguins, all that Sam loves.
"We will have all of these positive things to remember instead of all the negative," Erin said.
They are running, and they know that. But it sure beats sitting around watching the clock of Sam's life tick away.
First, their white minivan zooms down the interstate toward Atlanta in early October.
They spend more time in the mall parking lot changing diapers and feeding newborns than much else, but Sam gets to see dinosaurs at the Fernbank Museum of Natural History. He builds dump trucks at Legoland and watches beluga whales swim at the Georgia Aquarium.
They return home for a few days, then drive to New York, a hellish journey of screaming babies and endless traffic jams.
But once they arrive, the smog of irritation clears and Sam sees skyscrapers and rides the subway and waddles with penguins at the Central Park Zoo.
Then, the family takes Sam's Make-A-Wish trip to Disney World where they meet Erin's sister. She also has a 2-year-old son, Christian. The two boys - one burly and active, the other verbal but limping - forge fast and deep bonds.
They hit Magic Kingdom, Animal Kingdom, Epcot, Universal Studios and Island Adventures. They see giraffes, elephants, zebras and crocodiles. They play at a Curious George playground and ride a triceratops.
They have sleepovers.
"They love each other," Erin said.
When they return home from another trip, this one to Asheville, N.C., Sam turns fussy. His peripheral vision seems gone; his anxiety soars.
He wants to paint. He doesn't want to paint. He wants a fort. He doesn't like the fort.
He only wants his mom.
Only watching Curious George, wrapped in his blanket, soothes him.
Is it a normal part of approaching 3?
Erin and Mike feel the clock ticking over his life, louder and faster than ever. It's time to run again, to head out for a 10-day trip to see Mike's parents.
Fog blankets Charleston on Dec. 8. Cold and damp, it's the kind of day that quiets the mind to whisper unspeakable thoughts like: Today, Sam's third birthday, might be his last.
Mike and Erin hold a party.
Sam picked out the decor: dinosaur centerpiece, Elmo balloon and dinosaur masks.
He wears a Curious George shirt and Cookie Monster helmet. Almost everyone else - his parents, close friends and two aunts - wear white "I love Sam" T-shirts.
Sam requests a fort.
Soon, a red sheet and a vacuum create a shelter until Erin emerges in need of fresh air.
"Close the door!" Sam calls.
Family friend Amelia Moscowitz, a 10-year-old with an admirable determination to engage Sam, presents a giant gift bag: "Want to open presents?"
Despite a no-gift decree, Amelia and her brother Eli, 7, give him a giant triceratops.
Sam eyes the TV.
"Watch a show?" he asks.
It's code for watching Curious George, the balm that soothes whatever is going on inside his brain.
But its cake-eating time, and Sam soon sits before a snowman cupcake with a candle shaped like a 3.
Happy birthday to you.
Happy birthday to you!
Happy birthday dear Sam ...
In a single puff, before cellphone cameras are properly aimed, Sam blows it out.
"Do it again!" He points at the smoking candle. "Fire."
They light it and sing again.
Soon, Sam opens a new toy drum set. He looks at it hopefully. Erin frowns. One of his sisters is napping.
"I be very gentle," Sam promises in his sweet, little boy voice.
"OK babe," she sighs. "Don't know how I could say no to that."
She tackles the box and plastic wrap until a drum emerges. Sam taps it. Again. And again.
He eyes a snare. And a tom. Then the cymbal. Erin unwraps them all, and he happily taps and bangs away.
He does not ask for Curious George or hide in his blanket. He does not get fussy.
Erin leans back to watch him.
"This is great," Mike says softly.
But the clock still ticks.
Two days later, they head for Erin's hometown in Minnesota. They plan to stay for several weeks at least; how long remains unplanned.
Sam is thrilled to see his cousin Christian again, the one his age he bonded with at Disney.
The boys, one rambunctious, one cautious, take off playing. Christian lures Sam from the TV, from his anxieties and the security of Curious George. They play like 3-year-olds, immersed in games like throwing dinosaurs and dump trucks and plastic balls over the side of their beds to create gigantic messes of toys and fun until someone cleans it all up and they start over again.
"They play together like magic," Mike said.
On Christmas, Erin's mom has so many gifts, the boys must open them in shifts.
Then, Mike and Erin spend the night out at a friend's New Year's wedding. Alone. Together. As life was before. Before Sam, before Ada and Mae and a diagnosis that changed everything.
Sam loves the beach, but back in the Lowcountry it's too cold to build sand forts and splash in the salty waves.
And the clock still ticks.
Erin surprises them all with a Christmas gift: a trip to Puerto Rico. That's where they are now.
When they return?
"Sometimes we have these really dark discussions of where we want to be when end-of-life care starts," Mike said.
On some level, they thought the trip to Minnesota might be Sam's last. But thankfully he is still living a post-radiation honeymoon. They are too.
So Mike and Erin will keep running, keep living, until the clock stops and they are left with so many memories of Sam.
The story of Sam
Erin Benson spends a quiet moment to calm her son Sam Lee, then 2, after he was getting frustrated and upset. Sometimes, his mom is the only one who can soothe his anxieties.×
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