The Villages Daily Sun

EUSTIS — Young girls giggle and chatter as they build a tower out of raw spaghetti noodles and elaborately decorated cupcakes.

They had arrived at Camp Boggy Creek only the previous afternoon, but already they’ve kindled new friendships. For the next week these kids will fish, swim, sing, ride horses, fly down Slip ‘N Slides of spaghetti and — of course — take their medications.

The kids at Camp Boggy Creek all have critical or terminal diseases.

This is cancer week.

It’s easy to forget how sick these kids are or were. Their energy reverberates through the camp as they play and shout cabin cheers to one another. Only the occasional wheelchair or shaven head is a startling reminder.

“The beautiful thing here is that they’re un-special. It’s the new normal,” said Sarah Gurtis, camp spokeswoman.

Kristen Aust, a 10-year-old from Lady Lake, hates to be special. She flops back onto her bunk when she sees a photographer. Kristen was diagnosed with stage three t-cell lymphoblastic lymphoma on Christmas Day last year and hates the extra attention her disease brings. She particularly looked forward to camp because there she’d fit in.

“More than anything it’s because she says everyone there is just like her,” said Diane Aust, Kristen’s mother. “She doesn’t like to be special. She doesn’t like to stand out in a crowd. Kristen has never been ‘look at me, here I am.’ If you want to be her friend, be her friend. She’s not a show-off.”

One of Kristen’s counselors, 21-year-old Hannah Zagar from Dover, N.H., said that although Kristen initially seemed reluctant or shy, she quickly began to make friends, inviting a new girl to sleep in the bunk below hers.

“With the kids, it’s the commonality. They’re not by themselves,” Zagar said. “I think she’s making friends. She gets redirected easily, so that helps, and she’s starting to take a leadership role.”

This is Zagar’s second year as a counselor, and she loves to watch as kids gain confidence throughout the week and to help them have a wonderful experience..

“I love camp,” Zagar said. “My favorite thing about it is, we as counselors, our job is to let them have the best week of their lives. So I like to live a week for someone else, and it’s really great to see them grow. … It’s just the place to be. It’s like home to me.”

Quality care and fun

Since the camp opened in 1996, more than 32,000 kids like Kristen have attended either its summer sessions or family weekends. It costs about $2,587 per camper for summer sessions, but these costs are covered by contributions and fundraisers so that the families are not burdened with more bills.

“For many families it’s a break because even if you have money when it started, medical bills take a toll,” Gurtis said.

Sick kids can have a blast while their parents can relax or reconnect with their other children, Gurtis said, and they can know that their child is safe and will have excellent medical care while at camp.

Children ages 7 through 16 with diseases such as cancer, hemophilia, asthma, sickle cell anemia and epilepsy can attend the camp, and each of the 1,500 kids each year goes home with a homemade teddy bear and afghan.

The first stop at camp is “The Patch” — the medical building with vibrant painted foliage crawling up the walls and exotic animals peeking out in the wall-to-wall murals. Here the staff holds all the children’s medications to distribute to them as needed.

“The goal is to keep them out of the medical center,” Gurtis said. “It’s funky and fun, but we want to keep them out as much as possible.”

In the dinosaur examination room, kids sit on a dinosaur exam table, naturally. Nurses distract them by hunting for the only splotch of red in the dino mural while they’re examined. Finally a little girl spots the tiny red ladybug and immediately names it Spot.

Some kids show up with only the clothes on their backs and no medicine, Gurtis said, but the camp is prepared for that. They have every medicine the children possibly would need, and they take photos of the kids so the numerous doctors and nurses know for certain they are giving the correct child their medicine.

Even the intensive care room is cheery, with teddy bears riding in hot-air balloons on the walls and brightly colored sheets.

“Obviously our goal is that no kid would have to see this room, but it’s fully equipped with everything a pediatric emergency room would have,” Gurtis said.

“The thing I love about this place is the details,” she said. “Even the sheets. They can’t be white because they see too many white sheets in the hospital.”

A tough year

Kristen has coped well with her disease, Diane said, but it has been trying for the whole family. Kristen’s disease is rare and takes much longer to treat than other cancers.

“You see a lot of end-of-chemotherapy parties (at the hospital) because a lot of children have leukemia, and they have only six to eight months of therapy,” Diane said. “And she has this rare cancer and she has two years and two months of chemotherapy.”

Since Christmas, Kristen lost her 8-year-old friend Ben to cancer, and her 4-year-old friend Christina beat her cancer and is now home. She will make new friends, Diane said, but it’s hard. Kristen has fought nausea and weeks of just feeling icky, but she still has her spirit. She was able to return to school briefly and finished fourth grade with straight A’s.

“If we just stay positive and not expect anything, then she’s able to handle what comes,” Diane said. “Because you just don’t know. You don’t know how she’s going to feel the next day.”

Kristen was supposed to attend the first cancer camp May 26 through June 1, but she got sick from her treatment and couldn’t go. Her doctor, Don Eslin, from Arnold Palmer Hospital in Orlando, volunteered that week as a physician, and he rearranged her chemo schedule so she’d feel well enough to attend the second cancer week June 13-19.

Diane had no fears of sending Kristen to camp, even though parents are not allowed to contact their children so they won’t get homesick or sad.

“I’m actually very excited for her,” Diane said. “I think she needs this. She needs to see that there are other children that are battling cancer and she gets to go to camp. I’m ready for her to go. I’m ready for her to see that she’s doing well.”

Fun, silliness and love

As Kristen’s cabin, G2 in the green “pride,” finishes cabin cleanup, the boys in cabin G3 shout over to them.

“Hey, G2.”

“Hey what?”

“Shake your rumpus.”

“We’re busy.”

“Shake your rumpus.”

“OK. Stomp! Shake your rumpus. Stomp, stomp! Shake your rumpus,” the campers, counselors and Gurtis sing as they dance a rumpus dance.

Cheers and chants erupt up and down the cabin path as the “prides” get ready for their first full day of camp. Kristen’s group is off to arts and crafts where they make the cupcake tower, popsicle stick people and beaded jewelry. Later that week would be the Silly Olympics where the campers and counselors paint themselves in their pride’s color and compete in the spaghetti roll — sliding down a Slip ‘N Slide of spaghetti — and the pudding drop — dropping pudding into their counselors mouths. Or faces.

“Once you’re diagnosed with one of these diseases, you’ve lost your power,” Gurtis said. “When you come to camp, we do everything we can do so you can do all you can do.”

That could be from fishing in the well-stocked lake — with a kiss-and-release policy, of course — or creating masterpieces in wood shop, Gurtis said.

Diane just hopes her daughter can regain her childhood during her stay at Boggy Creek.

“I hope that she has the time of her life,” Diane said. “I hope she comes back with even more hope that she is going to beat this. That she believes that it’s possible. And I hope that she gets the ability to be a kid. She can stop being the adult that she has to be to deal with the cancer. So I hope she just has the time of her life.”

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