The Villages Daily Sun

LADY LAKE — She loves horses, soccer, slumber parties, cheerleading, Michelle from the ’90s TV sitcom “Full House,” math and school.

But this straight-A fourth-grader at The Villages Intermediate Center can’t return to school or participate in many of her favorite activities until next fall.

Kristen Aust has cancer.

Doctors diagnosed Kristen’s cancer on Christmas Day last year: stage three t-cell lymphoblastic lymphoma, said her mother, Diane.

Kristen had awakened early Christmas morning, shortly after Santa’s presents appeared under the tree.

“I said, ‘What’s wrong? You need to go back to bed; he just came. You need to go back to sleep,’” Diane recalled. “And she said, ‘Mommy, I don’t feel good.’”

Then Kristen began coughing.

She coughed so hard she turned blue, her mother said, so Diane put her daughter and son, Kenny, in the car, dropped her son off with neighbors and rushed to The Villages Regional Hospital.

A tumor was wrapping around her trachea, it was found, closing off the airway. Doctors at Arnold Palmer Hospital for Children & Women in Orlando confirmed TVRH’s diagnosis.

A SILVER LINING

Despite the bad news that day, Kristen did get a surprise visitor.

“Santa Claus was right there when she got to Arnold Palmer,” Diane said. “Literally.

He said, ‘I’m looking for Kristen Aust. I went to Lady Lake and couldn’t find her.’”

It was the worst Christmas ever, Kristen says, although her mother insists it was the best Christmas, since the genetic disease finally showed itself.

“You know what, if she was born with it, then I tell her it was the best Christmas ever,” Diane said, “because it would be good to find out now rather than to have it come when you’re 15 or 17 or 19 or something because the younger they are, the better they recover.

“And the recovery rate for lymphoma (at Kristen’s age) is 75 to 80 percent, which is really good in the cancer world, and her age is what’s on her side.”

Two weeks into her treatment, Kristen, a beauty pageant winner, became tired of watching her blond hair fall out in tufts all over the house.

“I came home on a Wednesday night and she said, ‘Mommy, I want you to shave my head tonight,’” Diane recalled. “(I said), ‘No you don’t. Mom’s a hairdresser. You really don’t want me to do that.’ And she says, ‘I really want you to do it.’ And Grandma says, ‘I’ll do it.’ Kristen said, ‘No, I want Mommy to do it.’”

Jim Tavernier, Kristen’s coach on the Rutz and Sons team in the Lady Lake Soccer League, went bald as well, to show his solidarity.

At the big shaving-the-head party, Kristen got to shave her coach’s head.

Losing her hair didn’t seem to bother Kristen one bit, Diane said.

“Up there on the cancer ward, no one has hair,” Diane said. “So you’re the outcast and you’re the new kid. So now when she goes up there, she goes, ‘Mommy. That kid, he is new. He has hair. I’m going to make him a bracelet. Let’s make a poster.’ You know who’s new because they have hair. And she felt like she was one of the gang because she went back and she had no hair.”

Kristen is especially excited about how her hair will grow back because she has been told it typically comes back wavy or curly and two to three shades darker.

Throughout the stomach aches, the nausea and the headaches, Kristen remains upbeat. She thinks about the time when all this is over. After all, she tells everyone, she gets a golden retriever after her two years of chemotherapy.

BOUNDLESS BRAVERY

Even after losing her hair, Kristen hadn’t yet cried until she was interviewed for this article, Diane said. Finally, the tears came. Kristen sat curled up with her head on her mother’s shoulder as shy tears rolled down her cheeks.

The usually outgoing, happy 10-year-old could only squeak a few answers and eventually whisper a few sentences about her horseback riding trip on her birthday.

Diane wondered aloud if this was the first time she had seen her daughter cry since the diagnosis.

“She didn’t really cry,” Diane said. “She just seemed to take it in … I can’t say she was shocked, I can’t say she wasn’t shocked. She literally said, ‘OK.’ She did write me a note at the hospital about three days after she was diagnosed and said, ‘Mommy, please don’t cry. Because if you cry, I’ll cry. I know I have cancer, but I know I’m going to be better.’”

Kristen is a strong, brave kid, but complications have not been easy. She got out of the hospital Jan. 1, but was readmitted two days later with a fever. After coming home Jan. 8, she was readmitted a week and a half later when her chemotherapy medications caused a blood clot in her brain, resulting in seizures and strokes.

“Her left side was totally affected,” Diane said, “and she was afraid to come home and turn to the left. But now she’s totally doing great.”

Only a week after returning home once again, Kristen physically showed few signs of her strokes.

But the kid who loved school can’t remember it. She no longer recalls math — the subject she once adored.

“You don’t remember doing school, do you?” Diane asked her daughter.

“Unt-uh,” Kristen whispered.

“You don’t remember. You will,” Diane said. “That was your favorite thing to do in life. School and soccer.”

Other than the complications, Kristen is doing well. In the first month of chemotherapy, her tumor has completely shrunk, Diane said, and she seems to tolerate and even enjoy quiet time at home with relatives.

That particular day she had watched all but four episodes of season one of “Full House” with her aunt Annette.

IT TAKES A VILLAGE

As a single mother, Diane can’t stay home with Kristen, since her kids rely on her to pay the bills.

And medical costs are mounting.

Relatives from across the country have come down for a week at a time to stay with Kristen during the week. But in March, her string of relatives ends.

“Right now it’s been easy to find family to be with her, but I know that’s going to change in a couple months,” Diane said. “They can only uproot their lives so many times, so it’s going to be a struggle for me in the summer to find retired nurses or people who want to hang out with her for a day here or a day there. Right now it’s worked out, but I know two years (of chemotherapy) is a really long time.”

The biggest way people can help, Diane said, is by volunteering to sit with Kristen so Diane can continue to go to work to support her children. Additionally, a charitable trust has been set up for Kristen to help pay her medical bills.

Students from the charter schools showed their support for the Aust family by raising about $10,000 in two dress-down days at school, said Leanne Yerk, principal of The Villages Charter Elementary School.

Children from all the charter schools brought in $2 for the privilege of trading their uniforms for casual clothes on a designated Friday. All proceeds went to the Aust family to help pay medical bills.

Kids who know Kristen have been eager to hear updates and have kept her in their prayers, Yerk said.

“They’ve been responding well in making cards and they had talked about wanting to make a special project for her, and they thought about making her a scarf for when she lost her hair,” Yerk said, “but her mom suggested they decorate a pillowcase because the children, when they’re down at Arnold Palmer, they have a pillowcase covering their IV bag. So they made a pillowcase with all their hand prints.”

Another group of students decided to raise funds to give Kristen a plant and gift cards, Diane said, since the money raised from the dress-down day all went to bills. The accompanying card said, “When things get tough, the girls go shopping.”

One girl, Alexis Todd, whom Kristen hadn’t really talked with since their pageant days together, donated her own Target gift card that she had received for her 13th birthday, Diane said.

Yerk believes pupils have learned from Kristen’s bravery and her illness.

“I think it’s certainly an opportunity to remember how special we are to each other,” Yerk said, “and to enjoy every day.”

Alexandra Lundahl is a reporter with the Daily Sun. She can be reached at 753-1119, ext. 9071, or alexandra.lundahl@thevillagesmedia.com.