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Callan Kott was diagnosed with acute lymphoblastic leukemia at age 3

A love of the "Star Wars" universe helped keep his spirit up

CNN  — 

Callan Kott’s parents knew that something was wrong with their child when the 3-year-old looked pale and suddenly stopped singing karaoke at a Christmas party in December 2015. The New Orleans boy was usually the “life of the party” who loved to dance.

Concerned that the pneumonia he had experienced around Thanksgiving had returned, they took him to the ER for a chest X-ray. Dr. James Hanley at Ochsner Medical Center in Jefferson, Louisiana, ordered some tests. A little while later, he sat down with Ross and Lisa Kott to break the news: Their son had acute lymphoblastic leukemia, a blood and bone marrow cancer.

“We had no clue that he was as sick as he was, really no warning at all,” Lisa Kott said. “It just came out of nowhere, just days before Christmas.”

Callan started chemotherapy treatment immediately. He responded well to it, and the staff at Ochsner worked to make sure the Kott family would be able to go home by Christmas.

Although Callan handled those rough few days well, he was also too young to understand why the nurses had to keep poking him with needles and taking blood samples. He would cry and get upset.

Desperate to keep him calm, his parents tried to distract him with videos. Before the nurses walked in with more needles, Ross Kott pulled up the trailer for “Star Wars: The Force Awakens.”

“When Ross showed him that preview, he composed himself,” Lisa Kott said. “It was the oddest thing. And I think we probably watched it a hundred times after that.”

Although Ross loved the “Star Wars” films as a kid, he had never shown them to his son or even mentioned the series. He was amazed to see Callan connect so strongly with a two-minute trailer. The boy’s favorite characters became Kylo Ren and the rolling droid BB-8.

Callan poses in a Chewbacca jacket with a poster of his favorite character, Kylo Ren.

Over those four days in the hospital, his parents kept showing Callan the trailer every time needles were involved.

“Then, his love of ‘Star Wars’ took on a life of its own,” Ross said.

Callan fell in love with “Star Wars” Legos and the “Clone Wars” animated series. “The Force Awakens” is the only film in the saga he has watched; his parents have tried to show him the others, but he lets them know when it gets too scary to continue.

Wanting to be sure the Kotts felt like they were in the right place, the staff at Ochsner played along, calling him “Star Wars Callan.” At first, when he would show up for treatment, the Kotts would make sure that his room was full of “Star Wars” decorations. Then, the nurses surprised them with their own decorations.

Every time the boy had one of his 18 or so spinal taps, they brought him a “Star Wars” balloon.

Callan’s treatment was like a roller coaster: bouts of intense chemo followed by lighter weeks, inpatient one week and outpatient the next. The hardest part for the very social kid was not being able to be in school, play with his friends or be around other family members due to his depleted immune system.

But during the ups and downs, he would “train” with his light saber in the hallway, wear the masks of his favorite “Star Wars” characters, sing the “Imperial March” and hold out his hands to “use the Force” in fighting his cancer. He told other patients that they could use the Force to help their cancer, too.

Callan practicing with his lightsaber.

When Callan had to shave his head, Ross Kott did it too, telling him it was part of training to become a Jedi. Callan also shares his love of Star Wars with his 2-year-old brother Ari. Photos on the family’s Facebook page show the two brothers wearing BB-8 beanies and playing with lightsabers.

“It’s a great outlet, it’s wonderful for a kid with such a serious diagnosis to relate to that level of imagination,” Lisa Kott said. “It’s almost like you need that to get through it. You can’t get through something so severe without really making it lighthearted for them.”

Callan received a door that is covered with the poster from his favorite movie, "The Force Awakens."

Ross said the “Star Wars” theme has been a great distraction, bringing everyone at the hospital together and boosting morale, including their own. Even though the couple has struggled with the diagnosis, they remain positive and upbeat around Callan and encourage his love of the sci-fi/fantasy series.

Callan started to improve without setbacks in August, and his hair grew back a couple months later. He was also able to return to school and be around other people. Now, he’s in remission and maintenance phase. His treatment and observation will last through 2019.

Callan’s story is helping inspire other children and families through the St. Baldrick’s Foundation, a charity that funds childhood cancer research and hosts events that bring together families affected by childhood cancer.

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About one in 285 children in the United States will be diagnosed with cancer before age 20, according to the foundation, and acute lymphoblastic leukemia is the most common type. According to the American Cancer Society, more than 90% of children diagnosed with the disease survive.

Callan will spend Thursday, “Star Wars” Day, at a May the 4th Be With You event surrounded by his favorite costumed characters at the Audubon Aquarium of the Americas in New Orleans.

He’s still fighting cancer every day, even though he looks like a normal kid, Ross Kott said. If his temperature ever appears higher than normal, they may have to take him to the ER.

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The family looks forward, rather than back. They’re grateful to the community that has supported them in every way throughout these difficult two years.

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    “Watching your child suffering when you’re helpless is one of the worst things you can experience in life,” Lisa Kott said.

    “I know that death is on the doorstop. I’m not going to let him in, and he’s going to be waiting there for a very long time. The difference between us and any other family is that they don’t see him at the doorstep. I see him, and in true Southern fashion, I will give him a glass of iced tea while he waits. Because we’re still going to dance and have fun in the presence of all that. It’s not going to be doom and gloom in our house.”