Volleyball team befriends girl battling to stay in remission from Leukemia

Applause rained down from the Activity Center’s stands as Kaitlyn Renee Johnson took the floor during the second and third periods of the volleyball team’s tight conference matchup against UT Tyler on Sept. 29. It was the moment everyone in the gym had been waiting for all night.

Outfitted in gold and black, the five-year-old and her squad of diminutive cheerleaders from Royce City entertained the crowd with an upbeat routine that featured dancing, tiny pom poms and chants that were sometimes hard to understand. Still, everyone in attendance gave Johnson and her teammates a standing ovation as they left the floor.

After the routine was over, Johnson cheered from the sidelines as the Comets held on to beat the Patriots 3-2 and remain undefeated in the ASC.

After the lights were turned off and the stands had finally been cleared, both teams would go home that night and resume their lives as normal.

Johnson, however, would go home and continue her fight to stay in remission from Leukemia.

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When Johnson’s mother, Mandy, noticed small dots all over her daughter’s body at 18 months old, she called the doctor to get her checked.

When they got to the doctor’s office on Nov. 11, 2011, the physicians performed standard tests and drew her blood. While they were waiting for the results, Johnson went up to her mother. That’s when Mandy felt the heat radiating off of her daughter’s body.

“All of a sudden she just crawls up in my lap and lays her head down on me and she is burning up,” she said. “She had a 103 degree fever. So I had stepped out to grab the nurse and the nurse was just about to give her some Motrin and the doctor came in and said, ‘No. Do not give that child Motrin. They’re going to Children’s Medical Center.’ She said, ‘Your daughter is showing signs of Leukemia.’”

The rest of that day is a blur for Mandy. They drove to the emergency room at Children’s Medical and were admitted to the cancer floor at 2:30 p.m. The next day, Johnson had her first round of chemotherapy.

During her therapy, she couldn’t leave the house because of how weak her immune system was. Mandy would only dust or vacuum if Johnson was in another room.

For Mandy, though, the worst part was watching her child suffer. There were times when Johnson would ask her mother to make her feel better, but there was nothing Mandy could do.

One of the more difficult aspects of chemotherapy set in when Johnson started to lose her hair.

“The worst thing is, she’s a little girl and she’s like, ‘I’m losing my hair!’” Mandy said. “The first time, it didn’t really bother her because she was so young, but now she was at the age that she knew and that was hard.”

After two and a half years of extensive treatments and difficult adjustments, Johnson received her last dose of chemo on March 7, 2014. Her family was slowly adjusting back to life as normal, but they still remained wary.

On July 11, 2014, Johnson went in for another round of blood work.

“She’s a social butterfly, she loves to talk and visit and everything, so we were making our rounds to all of the nurses,” Mandy said. “About that time, her doctor came out from the back and he’s like, ‘You can’t leave.’”

Even though the doctor wouldn’t say it, Mandy knew something was terribly wrong.

“My husband and I knew at that point that she had relapsed,” she said.

They went to the hospital, where Johnson spent 45 days as an inpatient while the doctors tried to find some way to get this latest attack under control. Nothing seemed to work. The marathon stay took its toll on Johnson.

“You could just see it,” Mandy said. “She was like, ‘I just want to go home.’ She was so tired of being in there.”

The family kept trying, but the cancer continued to grow. That’s when their doctors recommended an experimental treatment in Philadelphia that uses a de-activated HIV virus to manipulate one’s T-Cells. After the family spent six weeks in Philadelphia, the cancer finally went away for a second time.

“If it wasn’t for that experimental treatment, she may not be here today,” Mandy said.

Even though the cancer has gone away, the family is not without its challenges. Along with dealing with the prospect of losing their daughter, they have had to talk to Johnson one-on-one about losing her life.

“When we had come home from the hospital after being there for 45 days, she had told me and her dad she was not going to take her medicine,” Mandy said. “And I said, ‘Honey, if you don’t take your medicine, you’ll go up to Heaven’ … We had to sit down and have the conversation of ‘If you don’t take this, you will die’ … That has been the hardest.”

There is still a chance that the cancer may come back, but Johnson’s family takes it day by day and does their best to make Johnson feel like any other child. Johnson loves to be active, so they worked with the Friends of Jaclyn Foundation — a non-profit that pairs children who have cancer with local high school and college teams — to find a team Johnson could adopt.

After looking through the teams available, Johnson chose UTD’s volleyball team.

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When members of the team first met Johnson this summer, they immediately took a liking to her. Johnson and her mom have been involved ever since.

The team has started several new traditions in honor of Johnson, including having a special locker dedicated to her that the players fill with gifts. Along with the locker, Johnson has been introduced as an official member of the team during the Comets’ home games this year, sporting the number 00.

Senior captain Abbie Barth has been there to walk with Johnson during those intros.

“She’s awesome,” she said. “She’s got quite the personality. She’s cute, she’s funny, she’s very outgoing. I think she puts a lot of things in perspective for us. Whenever we’re having a hard time, we kind of think about her and the hard times she’s gone through — and she’s only five.”

September is Childhood Cancer Awareness month and since the team only has five home games this year, it designated its game against Tyler as its first ever “Gold Out” game in honor of the month’s official color.

The Comets sported gold warm ups and socks and encouraged attendees to wear gold-colored apparel. The athletics department also sold special gold shirts for $20 to help raise money for childhood cancer victims. The players and coaches from Tyler each gave Johnson a gold bead necklace and the athletics department presented her with a commemorative gold ball signed by every member of the volleyball team.

Even though the game seemed inconsequential given the circumstances, it proved to be a nail biter. After four back and forth sets, Tyler was able to extend the game to a fifth period in front of a packed crowd.

As the Comets gathered in the huddle to get ready for the final set, Johnson was on their minds.

“That fifth set, we wanted to win it,” Barth said. “We were talking about her, we were like, ‘We have to win for Kaitlyn.’”

The Comets came back to form in the fifth set, and took down the Patriots 15-9. After the victory, Johnson said she felt “cool” cheering in front of everybody.

As the stands cleared out, Mandy couldn’t help but admire the support everyone had shown her daughter. She and her husband are still fighting to keep Johnson healthy and she does her best to get the word out about Johnson so others can be more aware of childhood cancer.

That night, a gym full of people knew who her daughter was.

“It really is heartwarming,” she said. “I have to hold back my tears, but it’s heartwarming to see all of this and know that they’re doing this for my child … it makes me very happy.”