When Kids Get Cancer


Published:

Kari Bourg was brought to tears one day when she stopped to read her daughter’s fourth-grade essay on "What hope means to me," a character education assignment that had been posted with classwork in the school’s hallway.

Eliza Bourg had drawn a picture of herself lying in a hospital bed attached to IV lines.

"I needed to have hope when I had cancer," Eliza had written. She also described knowing that she could have died during her more than two years of chemotherapy.

Kari Bourg framed her daughter’s essay, and it now hangs on a wall in their home in Charlotte. It was a rare insight into Eliza’s feelings about having cancer. "She finished treatment when she was 7, and I didn’t know if she knew during that time that she could have died," Bourg said. "(Reading that essay) was sort of a shock to me."

Though children who have cancer often grow up knowing the disease and treatment as "normal," a family’s life is upended the moment a child receives a cancer diagnosis. The journey ahead, as one medical professional describes it, is a marathon, not a sprint. For many families, nothing in their lives will ever be the same.

Many families don’t even go home right after a child is diagnosed. They often are sent directly to a children’s hospital, and the child is checked in for several weeks to begin testing and treatment.

Heather and Jim Smith’s son, Bryson, was diagnosed with leukemia when he was 4 years old. They had only brought his puppy pillow and blanket to comfort him at the doctor’s office.

"When we got to the hospital, they were like, ‘Where’s your stuff?’ You’re going to be here for a while," Says Heather Smith. "Then you don’t want to leave because you have that panic inset in you."


The Implications

McElwain.pngThe first symptoms of cancer are often hard to recognize. A child may complain of a persistent pain or ache almost anywhere, including his or her ankle or back. Charlotte mom Meg McElwain discovered strange bruises on her 3-month-old son Mitchell Turner’s legs the Sunday he was baptized.

By 5 o’clock the next day, McElwain and her husband, Frank Turner III, had learned that Mitchell had a rare form of leukemia. Doctors scheduled surgery for Tuesday morning and told the couple that a port would be inserted into the main valve of Mitchell’s heart.

"I just can’t put into words how overwhelming it was for us," says McElwain. "It was just complete and utter shock, and then, ‘Here’s the water hose, starting drinking and making decisions.’"

Families often find themselves isolated and forced to quickly educate themselves about their child’s condition and make huge decisions about treatment. As the long-term implications become clearer, the impact spreads to the whole family.

The first year of treatment can be intense, requiring repeated hospitalizations. The children also can be sick and can’t go places where they could pick up germs, such as schools and grocery stores. A fever of more than 100.4 can mean an automatic 48-hour stay in the hospital for a child with cancer.

Many times, one parent quits his or her job, or must find help or adaptions to manage their child’s health.

Bourg, an attorney, took a leave of absence from her job in the Washington, D.C., area and never went back because of the time required to care for Eliza and take her to the cancer clinic. McElwain, who owns her own business, has help from a child-care provider and set up her office at Hemby Children’s Hospital.

The implications of cancer can severely impact siblings, who also must adjust to their family’s new situation. Often the family’s decisions are determined by the health of the child with cancer.

"We quickly went from the kind of family that was like, ‘Wow, what do we want to do next month?’ to having to live right now and what needs to be taken care of in the next few minutes," said Anne Roe, whose son Eli was diagnosed with leukemia at age 2. "We really had to just live in the present."

That meant learning a new way to talk with their son Henry, who is two years older than Eli. If they had to cancel a play date for Henry or an outing because Eli was sick, they learned to assure Henry that he had not been forgotten.

"We would say things like, ‘We are planning to go out to eat for your birthday, but if your brother throws up in the middle of the restaurant and we have to leave, we will make a new plan," Roe said.


Leaning On Others

Support from friends, family and medical professionals can be vital for families who are navigating a child’s cancer diagnosis and treatment.

"Parents who have the support they need will cope best with their child’s diagnosis and treatment demands," says Melani Dove, a pediatric oncology social worker with Presbyterian Blume Hematology & Oncology Clinic. "Most importantly, children whose parents cope well cope better themselves."

Parents of children with cancer learn that the smallest taste of normalcy can be a sanity preserver, whether it’s a conversation about someone’s new dress or a 30-minute trip to the grocery store.

McElwain, who loves finding bargains on children’s clothes, said she shopped at a consignment sale soon after Mitchell’s diagnosis. She ran into two people who jumped at the sight of her because they weren’t expecting her to be out.

"Even though our whole world revolves around this crazy new normal, we yearn for our old normal and need that, even if it’s for 30 minutes," she says. She wants friends to treat them normally and relishes everyday conversations that don’t involve cancer.

Many families build new friendships with other families they meet at the hospital or at support groups. Hospitals also provide professional counselors and other medical staff who answer questions and help families cope.

Heather and Jim Smith have found joy in helping other families who have a child with cancer. Through Bryson’s F.U.E.L., their nonprofit organization, they provide toys, blankets and toiletry bags to families at children’s hospitals all over the United States and arrange for families to have outings together.


The Long Term

BrysonSmith.pngTreatment for childhood cancer can extend well beyond remission because of the high rate of recurrence, and some children will deal with the aftereffects of treatment for the rest of their lives. Families can end up thousands of dollars in debt from medical bills and forced to adjust to new limitations that affect everyone in the family.

Bryson Smith, 6, is now 1.5 years into a 3.5-year treatment plan. Even though his body is free of cancer cells, the treatment and its side effects have changed how the family operates.

Though they once spent weekends camping, now they can’t even take Bryson to the grocery store during flu and cold season because of his risk of infection. He can’t fly on planes or even attend public school, so he goes to a small private school where there is less of a chance that he will catch an illness. His bones are brittle from chemotherapy, so he can’t learn to ride a bicycle.

Several "late-effect clinics," including one at Blume and the Levine Children’s Hospital’s CARE clinic, focus on the long-term effects of cancer treatment, which can range from heart concerns to dental issues to fertility problems.

ElizaBourg.pngEliza Bourg is now 11 and a sixth-grader at J.M. Robinson Middle School. She is a straight-A student and does gymnastics, something her parents wondered for a long time whether she’d be able to do again. In May, the family will celebrate five years since her diagnosis and her official designation as being "in remission."

For Eliza, the celebration might not be a big deal. Her parents, however, have been so affected by their journey with cancer that they have raised thousands of dollars themselves for cancer research and the Make-A-Wish Foundation.

"I want to give thanks and acknowledge how lucky we are, because I realize how many people haven’t had the same positive outcome we have," Smith says.

"Her five-year mark will be a huge event for us. My husband and I are anxiously awaiting that."


Marty Minchin is the mom of two children and a freelance writer based in Charlotte.


Tips for Helping a Family Whose Child Has Cancer

When 3-month-old Mitchell Turner was diagnosed with cancer, his mom, Meg McElwain, posted the news on her Facebook page and triggered an avalanche of responses. She was quickly overwhelmed with text messages, cell-phone calls and emails, some from people she hadn’t heard from in years.

Assigning a close friend or family member to manage messages and offers of help can provide a buffer in the days and weeks after a cancer diagnosis, says pediatric psychologist Amii Steele, who works at the Hematology and Oncology Center at Levine Children's Hospital.
 

Here are some tips for helping a family whose child has received a cancer diagnosis:

  • Send a message or leave a voicemail without expecting a reply. The family will be overwhelmed initially by emotions and decisions.
  • Volunteer to organize the other volunteers by creating a meal or child-care schedules.
  • If you feel anxious about the family’s situation, don’t express it to the family.
  • Don’t ask "How can I help?" Instead, make specific, practical offers for everyday tasks such as mowing the lawn or picking up dry cleaning.
  • Have regular conversations with the parents. They don't always want to talk about cancer and may crave simple discussions about the weather or the latest episode of "Modern Family."
  • Don’t forget the family. Cancer treatments can last years, and the family could use help and friendship for the long term.

Local Medical Facilities and Organizations

Levine.pngCharlotte is home to extraordinary medical facilities and organizations that provide support for families with children living with cancer, including:

Presbyterian Blume Pediatric Hematology & Oncology Clinic
Provides comprehensive cancer treatment center and support services. presbyterianblume.org.

Levine Children's Hospital
Provides treatment, support services and clinical trials. levinechildrenshospital.org

Levine Children’s Hospital’s CARE Clinic (Caring About Remission Everyday)
CARE (Caring About Remission Everyday) provides follow-up care and support for children who are in remission. levinechildrenshospital.org.

Buddy Kemp Cancer Support Center
Provides support for families and children after a cancer diagnosis. presbyterian.org/buddykemp

Cookies for Kids Cancer Charlotte
Raises money for pediatric cancer research. cookiesforkidscancer.org.

Camp CARE
Provides a camp for Charlotte-area children who have had cancer, and their siblings. campcare.org.

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July 2020

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Multiplied: Edition MAT and the Transformable Work of Art examines the rise of three-dimensional objects issued in editions, which emerged as an international phenomenon in the 1960s and 1970s.

Cost: $5-$9, children younger than 10 free

Where:
Bechtler Museum of Modern Art
420 S. Tryon St.
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View map »


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More information

The Things Come Apart exhibit reveals the inner workings of common, everyday items. Images explore how things are designed and how technology has evolved over time.

Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
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Mint Museum Randolph
2730 Randolph Road
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Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
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Website »

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Cost: $11 for one hour

Where:
DefyGravity Trampoline Park
8116 University City Blvd.
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View map »


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Cost: Free

Where:
The Billy Graham Library
4330 Westmont Drive
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View map »


Sponsor: The Billy Graham Library
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Cost: $8, $10 on weekends and school holidays

Where:
Superior Play Systems
11415 Granite St.
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View map »


Website »

More information

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Where:
Mint Museum Randolph, 2730 Randolph Road
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View map »


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Website »

More information

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Cost: $6-$15, children 4 and younger free

Where:
Mint Museum Randolph
2730 Randolph Road
, NC
View map »


Website »

More information

Multiplied: Edition MAT and the Transformable Work of Art examines the rise of three-dimensional objects issued in editions, which emerged as an international phenomenon in the 1960s and 1970s.

Cost: $5-$9, children younger than 10 free

Where:
Bechtler Museum of Modern Art
420 S. Tryon St.
, NC
View map »


Website »

More information

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Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
Gastonia, NC
View map »


Website »

More information

This exhibit explores the various aspects of walls, which includes the artistic, social, political and historical aspects, as well as the physical barriers like fences or sand berms. The space is...

Cost: $6-$15, children 4 and younger free, included with admission

Where:
Mint Museum Uptown
500 S. Tryon St.
, NC
View map »


Website »

More information

Join us for our Pinkyswear Virtual Kids Triathlon event. This virtual event which kicks off formally on June 1st for all ages and abilities, and the triathlon can be completed anywhere! The...

Cost: $15

Where:
, NC


Sponsor: Pinkyswear Foundation
Contact Name: Valorie Liggett
Website »

More information

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Cost: $21-$31

Where:
New Hope Baptist Church
2024 Redbud Drive
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View map »


Website »

More information

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Cost: $11 for one hour

Where:
DefyGravity Trampoline Park
8116 University City Blvd.
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Website »

More information

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Cost: $5

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700 West C St.
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Cost: 250

Where:
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801 N Tryon St
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View map »


Sponsor: AerialCLT
Telephone: 980-292-1593
Contact Name: AerialCLT
Website »

More information

George Beverly Shea and Cliff Barrows presented faith of Jesus Christ in song. Come discover the ways the Lord used their efforts and their music to open hearts around the world. Read inspiring...

Cost: Free

Where:
The Billy Graham Library
4330 Westmont Drive
, NC
View map »


Sponsor: The Billy Graham Library
Website »

More information

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Cost: $8, $10 on weekends and school holidays

Where:
Superior Play Systems
11415 Granite St.
Suite C
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View map »


Website »

More information

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Cost: $6 for parking

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5000 Whitewater Center Pkwy.
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View map »


Sponsor: USNWC
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More information

This exhibition is the first to focus exclusively on the black basalt sculpture made by Josiah Wedgwood and other Staffordshire potters in late eighteenth-century England. 

Cost: $6-$15, children 4 and younger free

Where:
Mint Museum Randolph
2730 Randolph Road
, NC
View map »


Website »

More information

Multiplied: Edition MAT and the Transformable Work of Art examines the rise of three-dimensional objects issued in editions, which emerged as an international phenomenon in the 1960s and 1970s.

Cost: $5-$9, children younger than 10 free

Where:
Bechtler Museum of Modern Art
420 S. Tryon St.
, NC
View map »


Website »

More information

The Things Come Apart exhibit reveals the inner workings of common, everyday items. Images explore how things are designed and how technology has evolved over time.

Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
Gastonia, NC
View map »


Website »

More information

This exhibit explores the various aspects of walls, which includes the artistic, social, political and historical aspects, as well as the physical barriers like fences or sand berms. The space is...

Cost: $6-$15, children 4 and younger free, included with admission

Where:
Mint Museum Uptown
500 S. Tryon St.
, NC
View map »


Website »

More information

Join us for our Pinkyswear Virtual Kids Triathlon event. This virtual event which kicks off formally on June 1st for all ages and abilities, and the triathlon can be completed anywhere! The...

Cost: $15

Where:
, NC


Sponsor: Pinkyswear Foundation
Contact Name: Valorie Liggett
Website »

More information

Show More...
Show Less...

Drop off your little ones to explore, play and learn during Music Mondays, Theater Thursdays and Food Fridays. A small snack is provided. Register online.

Cost: $21-$31

Where:
New Hope Baptist Church
2024 Redbud Drive
Gastonia, NC
View map »


Website »

More information

Toddlers can enjoy a special jump session every weekday morning. With each child age 6 and younger, an adult may jump for free, not including DefyGravity socks for $3.

Cost: $11 for one hour

Where:
DefyGravity Trampoline Park
8116 University City Blvd.
, NC
View map »


Website »

More information

George Beverly Shea and Cliff Barrows presented faith of Jesus Christ in song. Come discover the ways the Lord used their efforts and their music to open hearts around the world. Read inspiring...

Cost: Free

Where:
The Billy Graham Library
4330 Westmont Drive
, NC
View map »


Sponsor: The Billy Graham Library
Website »

More information

Drop in for safe play on the equipment indoors.

Cost: $8, $10 on weekends and school holidays

Where:
Superior Play Systems
11415 Granite St.
Suite C
, NC
View map »


Website »

More information

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View map »


Website »

More information

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Cost: $5 per swimmer, max $15 per family

Where:
Goldfish Swim School
13403 S. Ridge Drive
, NC
View map »


Website »

More information

Kids, are you ready to run off with the circus... for a week? Whether your child is ready to join the circus for the first time, or wants to push their circus skills to the next level. Our Aerial &...

Cost: 250

Where:
AerialCLT
801 N Tryon St
Charlotte, NC  28205
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Sponsor: AerialCLT
Telephone: 980-292-1593
Contact Name: AerialCLT
Website »

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rab dinner from a variety of local food trucks at this weekly rally. Visit the website for a list of participating trucks.

Cost: Free admission

Where:
Resident Culture Brewing Company
2101 Central Ave.
, NC
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This family-friendly event features craft brews, wine, cider, live music and the best food trucks in Charlotte. Bring the whole family, including your dogs. Along...

Cost: Free

Where:
Sycamore Brewing
2161 Hawkins St.
, NC
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Treat the kids and yourself to a fun night out! Drop kids off to run, play and dance. Pizza dinner is included.

Cost: $25

Where:
Romp n' Roll NW Charlotte
3611 Mt. Holly-Huntersville Road
207
, NC
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Website »

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Live the story of Stephen and the Apostles. Experience the rousing power of ANNO DOMINI: the year of our Lord while enjoying a Greek dinner.

Cost: $10-$40

Where:
NarroWay Theater
3327 Highway 51
Fort Mill, SC  29715
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Website »

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River Jam brings live music outdoors, right in the middle of the world’s largest man-made whitewater river. Hear music on Thursday, Friday and Saturday nights, as well as during each of...

Cost: $6 for parking

Where:
USNWC
5000 Whitewater Center Pkwy.
, NC
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Sponsor: USNWC
Website »

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This exhibition is the first to focus exclusively on the black basalt sculpture made by Josiah Wedgwood and other Staffordshire potters in late eighteenth-century England. 

Cost: $6-$15, children 4 and younger free

Where:
Mint Museum Randolph
2730 Randolph Road
, NC
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Website »

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Multiplied: Edition MAT and the Transformable Work of Art examines the rise of three-dimensional objects issued in editions, which emerged as an international phenomenon in the 1960s and 1970s.

Cost: $5-$9, children younger than 10 free

Where:
Bechtler Museum of Modern Art
420 S. Tryon St.
, NC
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Website »

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The Things Come Apart exhibit reveals the inner workings of common, everyday items. Images explore how things are designed and how technology has evolved over time.

Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
Gastonia, NC
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Website »

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See the original, Broadway-style dinner show, and experience the story of Stephen and the Apostles. See website for showtimes.

Cost: $10-$40

Where:
NarroWay Theatre
3327 Hwy 51
Fort Mill, SC
View map »


Sponsor: NarroWay Productions
Telephone: 803-802-2300
Website »

More information

This exhibit explores the various aspects of walls, which includes the artistic, social, political and historical aspects, as well as the physical barriers like fences or sand berms. The space is...

Cost: $6-$15, children 4 and younger free, included with admission

Where:
Mint Museum Uptown
500 S. Tryon St.
, NC
View map »


Website »

More information

Join us for our Pinkyswear Virtual Kids Triathlon event. This virtual event which kicks off formally on June 1st for all ages and abilities, and the triathlon can be completed anywhere! The...

Cost: $15

Where:
, NC


Sponsor: Pinkyswear Foundation
Contact Name: Valorie Liggett
Website »

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Adults and kids ages 10 years and older can swim, bike and run. A Kids' Tri and a Preschool Tri are offered as well. All finishers will receive a medal after crossing the bubble-filled finish...

Cost: $25-$55

Where:
Morrison Family YMCA
9405 Bryant Farms Road
, NC
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Various living history displays and reenactors will be present to interact with the museum guests telling of the US military involvement in the European Theater of Operations.

Cost: Free

Where:
Kings Mountain Historical Museum
100 East Mountain St.
Kings Mountain, NC
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Website »

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Car owners and enthusiasts gather to celebrate their passion for cars and showcase their prized classics, customs and hot rods. Occurs the third Saturday of the month, excluding May and October.

Cost: Free

Where:
Charlotte Motor Speedway
5555 Concord Pkwy. S.
Concord, NC
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Website »

More information

George Beverly Shea and Cliff Barrows presented faith of Jesus Christ in song. Come discover the ways the Lord used their efforts and their music to open hearts around the world. Read inspiring...

Cost: Free

Where:
The Billy Graham Library
4330 Westmont Drive
, NC
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Sponsor: The Billy Graham Library
Website »

More information

On Saturdays and Sundays from noon-5pm, the arcade bar opens to all ages with a parent or guardian present.

Cost: Cost for games

Where:
Abari Game Bar
1721 N. Davidson St.
, NC
View map »


Telephone: 980-430-4587
Website »

More information

Live the story of Stephen and the Apostles. Experience the rousing power of ANNO DOMINI: the year of our Lord while enjoying a Greek dinner.

Cost: $10-$40

Where:
NarroWay Theater
3327 Highway 51
Fort Mill, SC  29715
View map »


Website »

More information

Bring the family to hear live music in Davidson this summer! Dates: April 18, May 16, June 20, July 18, Aug. 15, Sept. 19 and Oct. 17.

Cost: Free

Where:
Circles at 30
Jetton Street
Davidson, NC
View map »


Website »

More information

River Jam brings live music outdoors, right in the middle of the world’s largest man-made whitewater river. Hear music on Thursday, Friday and Saturday nights, as well as during each of...

Cost: $6 for parking

Where:
USNWC
5000 Whitewater Center Pkwy.
, NC
View map »


Sponsor: USNWC
Website »

More information

This exhibition is the first to focus exclusively on the black basalt sculpture made by Josiah Wedgwood and other Staffordshire potters in late eighteenth-century England. 

Cost: $6-$15, children 4 and younger free

Where:
Mint Museum Randolph
2730 Randolph Road
, NC
View map »


Website »

More information

Multiplied: Edition MAT and the Transformable Work of Art examines the rise of three-dimensional objects issued in editions, which emerged as an international phenomenon in the 1960s and 1970s.

Cost: $5-$9, children younger than 10 free

Where:
Bechtler Museum of Modern Art
420 S. Tryon St.
, NC
View map »


Website »

More information

The Things Come Apart exhibit reveals the inner workings of common, everyday items. Images explore how things are designed and how technology has evolved over time.

Cost: $6-$7, children 3 and younger free, included with admission

Where:
Schiele Museum
1500 E. Garrison Blvd.
Gastonia, NC
View map »


Website »

More information

See the original, Broadway-style dinner show, and experience the story of Stephen and the Apostles. See website for showtimes.

Cost: $10-$40

Where:
NarroWay Theatre
3327 Hwy 51
Fort Mill, SC
View map »


Sponsor: NarroWay Productions
Telephone: 803-802-2300
Website »

More information

This exhibit explores the various aspects of walls, which includes the artistic, social, political and historical aspects, as well as the physical barriers like fences or sand berms. The space is...

Cost: $6-$15, children 4 and younger free, included with admission

Where:
Mint Museum Uptown
500 S. Tryon St.
, NC
View map »


Website »

More information

Join us for our Pinkyswear Virtual Kids Triathlon event. This virtual event which kicks off formally on June 1st for all ages and abilities, and the triathlon can be completed anywhere! The...

Cost: $15

Where:
, NC


Sponsor: Pinkyswear Foundation
Contact Name: Valorie Liggett
Website »

More information

Show More...
Show Less...
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Annual Guides

G.P.S. [Go.Play.See]

Your guide to raising kids in the Queen City, plus our 2019 Readers' Favorites for places to play, explore and learn with the kids.

Education Guide

A comprehensive guide to independent, private, charter and public schools in Cabarrus, Gaston, Iredell, Lincoln, Mecklenburg, Union and York counties.
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