O'Fallon Progress

Don’t wait ‘for the storms to pass, learn to dance in the rain’

Owen Clive, 8, cancer survivor who’s been in remission for three years and counting shows off his ‘beads of courage.’
Owen Clive, 8, cancer survivor who’s been in remission for three years and counting shows off his ‘beads of courage.’

Being a cancer survivor is not what defines Owen Clive, 8, of O’Fallon.

Lighting up a room, being a goofy, smart, nature-loving, superhero advocate are just some of the words that help to define the Marie Schaefer Elementary (MSE) second-grader.

“I’m silly,” Owen described himself.

His little sister Lillian, 4, concurred. “He’s so funny,” she said.

What keeps this family steadfast despite going through a military deployment to Iraq, cancer treatments for three years and extensive stay in hospitals — is a quote that hangs on a plaque above the Clive’s front door says it all, “Life isn’t about waiting for the storms to pass, it’s about learning to dance in the rain.”

Owen loves to dance in the rain, literally.

Son of Michael and Heather Clive, Owen was diagnosed on Aug. 17, 2009 with Acute Lymphoblastic Leukemia-pre B cell (ALL) at the young age of two.

For parents, family or friends affected by childhood cancer, Heather offered these words of advice. “Having a support group is key,” she said. “The best advice I ever received was you just have to take it one day at a time, but sometimes it’s not one day — it’s one hour, or even one second.”

Today, Heather is grateful to have Owen still in her life.

“Owen is a happy, healthy little boy who is so brave,” she said.

Owen was first admitted to Children's Medical Center of Dayton, Ohio, on Aug. 17, 2009, and received the majority of his care there before moving to O’Fallon, Ill.

Owen started his standard protocol for treatment two days later with a venous catheter placed. The protocol was 11 types of chemotherapy entered either through the catheter or spinal taps, or as his father describes drinking it, which smelled like rubbing alcohol, but with a grape flavor.

“I’ll never forget the smell of that,” Michael said. “In the beginning it was near impossible trying to get a two-year-old to swallow eight or more pills a day, so the hospital nurses and doctors had him drink his medicine for quite a while, which he ended up later having to be put under anesthesia by a dentist because he had so many cavities from the stuff.”

“He would take anywhere form 11 pills a day, and received spinal taps every three months through treatment which started Aug. 19, 2009 and ended on Nov. 20, 2012,” Heather said. “He also had two bone marrow aspirations.”

Initially, doctors put Owen on heavy doses of steroids, which caused him to be hungry and not to sleep a lot.

“He gained almost 30 percent of his body weight in 30 days,” Michael said.

The weight gain prevented Owen from walking for a while, Heather said.

“It was never easy, that’s for sure,” Michael said. “I was deployed to Iraq while he was still undergoing treatments and our daughter wasn’t born yet. (I didn’t meet her) until she was eight weeks old, but we got through it.”

Heather said Lillian was always at her brother’s side, while he was in the hospital.

“Closer to the end of treatment, we had to start taking Lily out of the room because she would try to take on the nurses who were trying to do intravenous (IV) work on Owen,” Heather said with tears in her eyes. “He’s always been a great big brother, even when things were really hard for him, and Lilly became very protective of him.”

One of Clive’s neighbors in Stone Briar subdivision is a nurse at St. Louis Children’s Hospital.

“She’s amazing, I don’t know how she does what she does everyday, I know I wouldn’t be able go to work doing that everyday. It’s people like that — the nurses and doctors who are battling these conditions in youngsters all day, every day who are my heros,” Heather said. “They made it fun for the kids to be in the hospital. Like one time in Dayton, the nurses silly stringed Owen, and it was so funny, he loved it.”

Nearly four years after treatment, “everything is clear,” both parents said.

“It’s a life long struggle. Just because treatment ends doesn’t mean that all the after effects and side effects go away. In my mind, I compare it to an amputation, it’s happened and you just have to adjust to it and there’s not much you can do about it after. There’s things to help accommodate,” Michael said.

Keeping Owen and his family busy are activities like basketball with the YMCA, and more recently with Upward Sports, a Christian youth sports network; Boy Scouts of America and recreational educational camps over the summer.

“Last summer we went hiking, and I got to use a BB gun and shoot a bow with arrows (which) was so cool,” Owen said. “We learned about animal skins and feathers too.”

In August 2015, Heather stated in her journal on the CaringBridge website, “(Owen) is amazing at math! He also loves to draw. I am so proud of the boy he has become. He is very protective of friends. Last year, he has learned that he is a cancer survivor. He timidly asks questions. Michael and I just give him the honest answers, this is hard, but he seems to process the truth well.”

Last year, the Make-A-Wish Foundation sent the family on a week-long trip to Florida’s Disney World and Universal Studios. They also visited Legoland and Sea World, Owen said.

“They were so wonderful to us,” Heather said. “One of his favorite parts and a big highlight for us to witness was one-on-one time with a woman who is a Disney animator. With his love for drawing, I feel like there was a real connection that he’ll always remember.”

The animator sent Owen home with his very own color picture she drew with him of the character Stitch from the animated 2002 film “Lilo & Stitch.”

“It’s lovely, we’re going to frame it,” Heather told Owen who inquired where mom had been safe keeping it.

According to Heather, Owen recently had a semi-annual checkup.

“He’s been moved to six-month checkups now, which is good,” Heather said.

According to Michael, Owen is part of a case study group at the hospital called the Late Effects Clinic. Doctors administered a test drug they were experimenting with before called Pegaspargase (PEG Asparaginase). It’s an anti-cancer chemotherapy drug, that Owen seems to be responding well, too.

“We want people to know that kids are still fighting this disease,” Heather said. “It’s only in the last 30 years that doctors have even developed treatments. Doctors gave him a drug that they were experimenting with. We were trying to ‘pay it forward’ in a way so he’s on for those who are still out there struggling with this. We just hope that by Owen being part of a study group, even though his fight with treatment has passed, there are still a need for early research and development to continue on, and we wanted to be apart of that.”

“Thirty years ago it was about 80 percent would pass away, well now, with certain kinds of cancer, 80 percent live, but doctors and researchers are uncertain of the long term effects because there isn’t enough case data and patients,” Michael said.

Michael works in logistics and in the supply chain at Scott Air Force Base and Heather is a preschool teacher at First United Methodist Church’s The Learning Tree Preschool off Highway 50 in O’Fallon.

For more information about the Leukemia & Lymphoma Society (LLS) “Pennies For Patients” fund-raising drive at MSE read last week’s article in the Progress or visit Schaefer’s LLS website.

Meet Owen Clive

Q: What are your favorite school subjects?

A: Recess and math.

Q: What are your favorite movie(s)?

A: Any Avenger movies or shows.

Q: What is your favorite food(s) or restaurant(s)?

A: McDonald’s and mac and cheese.

Q: What was your favorite vacation?

A: When we went to Florida with Make-A-Wish Foundation to Universal Studios and Legoland.

Q: What is your favorite thing to do and why?

A: I love to play video games like Batman 3 or Disney Infinity 3.0 because you can create your own worlds and bad guys.

Q: What are your family pets and their names?

A: Two family cats named Callie and Smokey, and they’re part of our family.

Q: What do you want to be when you grow up?

A: When I grow up, I want to be in the United States Air Force, like my Dad. But, I don’t want to be a pilot, maybe doing work with flight simulations like with Unmanned Aerial Vehical’s (UAV) (or commonly known as drones).

Q: If I could meet any famous person it would be?

A: The inventor of the Lego (Ole Kirk Christiansen, of Denmark) because he made the first lego and lego’s are cool! Or, Ironman, played by Robert Downey, Jr.

Q: What is an interesting fact about you?

A: I was born in Arizona.

Q: What was the last book you read?

A: Harry Potter and the Sorcerer’s Stone.

Q: Who is your hero?

A: My Dad because he helps me with basketball and Boy Scouts of America.

Q: What did you like least about having cancer?

A: All the pokes for blood draws.

Q: What bugs (irritates) you most?

A: My little sister because she’s just goes wild on me sometimes.

Q: What do you think is the coolest thing about you?

A: I’m silly, and brave.

Q: If you were stranded on a deserted island, what would you have to have with you?

A: Video games — it’s the only thing that would keep me alive.

Q: What would you say to the students who are helping with “Pennies For Patients”?

A: I would like to say thank you for helping.