Local Schools Youth & young adult

They’ve got spirit, yes, they do . . .

Sam and Scott share a laugh following the St. James game against Blue Valley Southwest.

Sam and Scott share a laugh following the St. James game against Blue Valley Southwest.

Family’s faith shines on the football field and through struggles


 

by Jessica Langdon
jessica@theleaven.org

LENEXA — Scott Charpentier has seen the heartwarming stories.

A coach puts a player with special needs into the game at the last minute.

To everyone’s delight, the youngster scores the winning point — whether it be a basket, a touchdown, or whatever — and the crowd erupts in cheers.

But Scott doesn’t believe his youngest son is “ever going to experience that.”

For the simple reason that “he’s truly playing the sport.”

Sam, who is a junior at St. James Academy in Lenexa, has Down syndrome. He’s a wide receiver for the school’s football team, with two seasons under his belt.

Sam’s parents sometimes have to look for his jersey number to spot him when he’s in uniform. He’s just one of the guys.

And that makes his face light up brighter than the stadium lights.

In the stands, the faces of his parents — Scott and Jessie — are beaming as well.

Sam can hear them cheering from the field.

“Sammmmmmmmy!” he mimics, with a laugh.

When he’s cheering for his team, though, you can’t miss him either.

“He’s just always on the sideline cheering everybody on, encouraging everybody,” said Jessie. “You can hear his voice!”

He likes to get people pumped up.

There’s a lot of that quality in his dad, too.

Only Scott is just beginning to realize it.

Since he was first diagnosed in January, Scott has been battling Stage IV cancer. As he fights his own illness, he has been boosting the spirits of fellow patients and living life to its fullest.

And missing one of Sam’s games isn’t in this dad’s playbook. If Sam suits up for a game, Scott is sure to be in the bleachers.

‘He’s living it’

The Charpentiers’ story began at a neighborhood pool in Lenexa where Jessie and Scott met.

They fell in love, got married, and began a family.

First came sons Casey, then Corbin. Next was daughter Danielle, and finally, their youngest, Sam.

Only Jessie was Catholic, but the children were raised in the church, and the family belongs to Holy Trinity Parish in Lenexa.

Jessie prayed over the years that her husband would convert. But all in all, day-to-day life, four kids and two jobs — Scott as a trim carpenter; Jessie as a nurse practitioner — kept them busy.

Sam spent his freshman year of high school at Olathe Northwest. Even after transferring to St. James in 10th grade, he still spends several hours at Olathe Northwest each day before taking a bus to St. James, where he takes five classes.

But his late entry into St. James didn’t slow Sam down one bit.

He will tell you he knows “a lot” of the school’s nearly 700 students — but don’t expect him to leave it at that. His friends — teachers and coaches included — are important, and he wants to mention each one by name.

For Sam, the few minutes between classes exist for “Hello” and “How are you?” and a host of high-fives.

A group of friends invited him to go to homecoming, so he dressed up, went out to dinner and danced the night away.

He got to school early the morning in October when KCTV came to feature St. James as a “Cool School.”

“He’s probably the most friendly person that I know,” said Madison Nearmyer, a senior at St. James and one of the peer mentors who work with Sam in each of his classes.

“People will walk by and see us in the hallway, and every person will stop and wave at Sam,” she said. “Sam is like a star. He makes everybody feel loved. It’s really cool.”

In theology class, peer mentor Kaitlyn Gingrich, who is also a senior, made up memorization games to help Sam learn the beatitudes.

“It was fun,” said Sam.

“You have to be on top of your game with Sam,” said Kaitlyn. “You always get the latest update on football. You have good conversations. It’s a good way to learn outside of class, as well.”

Sam’s days are long — he starts school before 8 a.m. and sometimes doesn’t get home from football until evening — but he doesn’t complain, said Terry Kopp with St. James’ guided studies program.

“He really is a special kid and really is experiencing the high-school life,” said John Muehlberger, dean of students. “He’s a real student, he’s a great friend, and he’s living it.”

‘One of the guys’

Muehlberger is part of St. James’ Response Team, which works with students who have special needs. He first met with Sam a few months before he started school there.

Muehlberger was also the head football coach at the time. Sam went to some of the summer workout sessions.

“He was just oozing with enthusiasm and excitement, and our community was very, very welcoming from day one,” said Muehlberger.

Jessie had always hoped one of her boys would turn out to be a football player. In her two oldest, she had a soccer player and a lacrosse player.

“Little did I know my football player was going to be Sam,” she told Scott.

Sam learned to tackle new — and sometimes tough — challenges.

“I wanted him to certainly feel like he was one of the guys,” said Muehlberger, “and really, to be honest with you, I was hard on him.”

He expected Sam, just like the rest of the team, to finish his sprints and do the conditioning.

His hard work paid off.

“He was able to perform when we put him in,” said Muehlberger.

And the team is learning from him, too. At first, his teammates were afraid of hurting him. He showed his mettle, though, and they came to see him as just part of the team.

Sam dresses out for junior varsity and varsity games. At the end of his first season, he got to play in a varsity game, a coveted opportunity for an underclassman.

“It was a neat experience because it didn’t come with a ton of fanfare. You weren’t going to find it on YouTube,” said Muehlberger. “He was just one of the team.”

Sam’s family has seen him undergo a tremendous transformation since he started playing.

In fact, Scott remembers watching the boys running sprints while carrying big wooden crosses and not immediately spotting Sam. He thought Sam might be dragging his cross. But no, he held his high, just like his teammates, and was running with them.

“This is incredible,” thought Scott.

One of the things he likes best about St. James is the way they “walk the walk,” infusing faith even into the competitive world of high school football.

Finding faith

As Sam was finding his way around the football field, however, Scott was growing increasingly ready to get off the sidelines when it came to his faith.

Throughout 2010, things just seemed to click. He had always been in love with Jessie, but he fell deeper in love than ever before.

He went to Mass with her. And knowing she prayed the rosary in the car, he thought briefly of giving it a try.

No, he finally decided, he would just listen to the radio.

Two days later, though, the radio broke.

Little things like that kept happening, each moving him a little closer to God.

He believes now his faith was being fortified in order to see him through what was to come.

A devastating diagnosis

As fall 2010 and its chill set in, the season started to wear on Scott.

Normally healthy, he just wasn’t feeling well.

One afternoon, he helped line the football field at the old St. Joseph Stadium in Shawnee, where St. James’ team was to play that night.

It took about four hours, and he came home that chilly October day feeling as if he had the flu. It had just been the worst day, he told Jessie.

Things didn’t improve. He didn’t feel like doing much, and he was eating less and losing weight.

Eventually, he went to one of those mini-clinics at a local pharmacy. The nurse prescribed some medicine, thinking he had a flu that had turned into a secondary infection.

Whatever it was, the medicine seemed to do the trick — for a while.

Around Christmas, though, the sick feeling came back.

Although Scott didn’t like going to the doctor, he made an appointment after the holidays.

By that point, he was also experiencing some pains in his side.

The early-January visit brought news none of them expected.

His symptoms, it turns out, were classic for cancer. A blood test showed his liver enzymes were elevated. They were seeing signs of metastasis of cancer in his liver.

He had an ultrasound and a scan. When the person performing the scan gave him a hug, he knew something had to be wrong.

He started to drive home, still not sure what it might turn out to be. He didn’t make it far.

“They called me up as I was driving home,” said Scott, “and they go, ‘You need to get back here right now.’”

He called Jessie.

The doctor wanted to talk to him. Scott was told to call his family physician right away.

He had to wait until the next day to see his own doctor, and that gave reality time to sink in.

It wasn’t any easier to hear the next day.

“I’ve got some bad news,” Scott’s doctor said.

They looked at one another for a moment without speaking.

“You have Stage IV cancer.”

Later, they would learn the cancer that had begun in his colon had spread to his liver.

Scott’s sister-in-law helped get him quickly into Research Medical Center in Kansas City, Mo. — so fast, in fact, he was beating his paperwork to some of the places, he said.

He turned to Dr. Jaswinder Singh, an oncologist at Research, for treatment, and chemotherapy started within days of his diagnosis.

At the beginning, the doctor saw a man dealing with the five stages of grief, as can be expected with a diagnosis like this.

Scott had been healthy before. Cancer isn’t what he expected at 51.

‘One of the most blessed things

But Singh soon saw changes in Scott, and noted the way his patient began to grow through his interaction with others.

He has a “very strong personality,” said Singh.

Scott began to share his story with the people around him — often seeing tears in others’ eyes or receiving hugs — and learning the stories of his fellow patients.

“He’s helping others,” said Singh simply.

Scott has a breakfast club going with one group of patients. They’ve become what he likes to call the cheerleading section.

He also prays for the people he’s gotten to know.

Scott remembers prayers from his younger days when he used to ask for things for himself.

“Please let me win the lottery,” was one, he recalled with a laugh.

Today, he doesn’t remember the last prayer he said for himself. They’re all for others now.

But Jessie and Sam have him covered.

And this year, Jessie got an answer to one of her prayers.

Scott decided that he wanted to move forward with becoming a Catholic.

So he and Sam, who had not yet been confirmed, went through the Rite of Christian Initiation of Adults program together.

Jessie’s dad, who converted to Catholicism as an adult, was Scott’s sponsor.

It was a day Scott will never forget. He had his son by his side, his family surrounding him, and longtime friend and neighbor Deacon Dana Nearmyer on the altar during the Mass.

“I was weeping when we were going through the entire service,” recalls Deacon Nearmyer. But he remembers the grin on Scott’s face.

“Sam wanted to chest bump me,” he said, laughing. “It was one of the most blessed things I’ve ever participated in.”

Under construction

The chemotherapy wasn’t easy on Scott.

Even on the hardest days, though, he wanted Jessie to know he was doing something she could be proud of.

When Deacon Nearmyer learned what that “something” was, however, he could hardly believe it.

Scott’s brother had taken up a collection from family members to buy the wood it would take for Scott to build the deck of his dreams . . . and threw the lumber in the driveway.

“I saw this pile of wood — I mean giant pile of wood,” said Deacon Nearmyer. “I thought he was going to build an ark.”

Often wearing the portable pack that delivered his chemo treatments, Scott threw himself into the work of building that dream deck, doing a little something every day, even if it was just putting down 10 boards.

“I’d be, like, ‘Scott, you can’t dig with a chemo pack on,’” laughed Deacon Nearmyer. Scott would tell him he had to get this hole finished — he had a lot of concrete coming.

Scott often showed up for his infusions happily covered in dirt and sawdust.

He needed the outlet.

When he grew tired or overwhelmed, he would sit down on the steps, put his face in his hands, and rest or pray.

Deacon Nearmyer often came across the street to visit and would find Scott sitting there. They’ve shared many conversations about life through the iron posts under the railing.

The deck is more than a sanctuary; it’s Scott’s story under construction.

“I can walk you through the deck, and I can tell you the good days and the bad days,” said Scott. He can point to certain places and say, “This was a very bad day.”

He thought at first he would fix the parts that aren’t perfect, but has since changed his mind.

“This is a true tribute to how I felt,” he said. “Some places are fantastic. Some are kind of rocky.”

One of the posts is crooked and has warped over time.

And that’s the way it will stay.

“That’s probably how I felt when I stood it up,” said Scott.

“It was just beautiful to watch that go up,” said Deacon Nearmyer. “He had to just use his strength for something other than fighting cancer.”

‘Our poster child’

In his physical battle, Scott has given all he has.

His doctor has also used every medicinal weapon possible against the cancer cells.

The drugs — the same ones given to many patients fighting cancer — are part of the equation, believes Singh. A patient’s outlook and attitude can go a long way, too, and he noted the spiritual impact.

For a patient, it can be scary entrusting your life to another person.

Scott knew he was in good hands when his doctor told him, “I look at you like my brother.”

The difference between his first colonoscopy and the second was night and day.

The first time, the cancer blocked the tools from even moving through the way they should.

That weighed on Scott’s mind as he went in for a second one this summer, after having started chemotherapy. With this colonoscopy, the gastroenterologist would internally mark — with a tattoo, grinned Scott — remaining tumors so they could be surgically removed.

But there was no cancer to remove.

Scott remembers hearing Jessie say “miracle” a couple of times to someone else after his procedure.

“The doctor came out and he said the tumors are all gone — totally gone — in his colon,” said Jessie.
He checked five or six times to be sure.

Scott acknowledges the outcome will likely be different with the cancer in his liver.

He’s still going through treatment, but doing it with sense of humor and a smile. He keeps his medical team on its toes, thinking beyond cancer to the everyday things like wanting to have his cholesterol checked or his teeth cleaned.

“He’s just doing really well,” said Singh.

Singh sees in him an attitude of “Don’t just stop — keep going.”

“He’s been . . . basically my role model,” said Singh. “He’s our poster child.”

Living in the moment

Most people probably wouldn’t guess Scott has been so sick by looking at him.

Sometimes he wishes he had a T-shirt or something that tells people he has cancer, because many find it hard to believe.

He stands tall and has actually put on some weight since he was diagnosed.

He credits his wife for keeping up his spirits — and his weight — through her constant encouragement.

When he feels good, he’s out and about. He loves going to St. James. He has been deeply touched by kids he hasn’t even met — but who know him through Sam — telling him they’re praying for him.

On the bad days, he tends to stay home.

Jessie has drawn inspiration from a book by Mother Angelica, who founded the Eternal Word Television Network. She offers a lot of humor, as well as the advice that you can’t live in the past or worry about the future.

“So that’s how we try to live,” said Jessie. They don’t know exactly what the future will bring, so they make the most of every moment they have now.

Somehow, things work out. Moving from two incomes to one hasn’t changed them.

The only changes Scott has noticed from being sick have been good ones.

They’ve kicked stress out of their home; it’s their sanctuary.

The extended family has grown much closer.

Scott was never really a hugger before, but has come to embrace his new life as one. New and longtime friends can expect a hug.

He doesn’t fight the tears that come during life’s poignant moments.

He wouldn’t wish this illness on anyone.

But he will tell you he’s happier than he’s ever been.

‘Squeeze’

The spirit of this family inspires the people who know them.

“They certainly talk the talk and walk the walk,” said Muehlberger. “They live life like you’re supposed to live life.”

He sees a lot of Scott’s attitude shining in Sam. Neither has ever met a stranger, he says.

The little moments are priceless.

Scott and Jessie celebrated their 25th anniversary this fall.

Deacon Nearmyer and Scott sat outside in October, both of them laughing as Nearmyer’s youngest daughter ran through the sprinkler in her pajamas.

Even in the tiniest moment like that, there’s so much life and camaraderie.

“Scott has taught me and continues to teach me through this epic struggle that every day is important,” said Deacon Nearmyer, “to tell the people around you that you love them and to just squeeze, squeeze the most out of life that you possibly can.”

Celebrating life

Scott has more doctors to visit these days and chemotherapy to go through but, other than that, their family is living as they always have — except maybe savoring each moment a little more.

And, naturally, that means they’re in the stands during every football game, cheering on Sam and just celebrating life.

“What else would you do, though?” asked Scott.

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Jessica Langdon

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