First day of school is first school day ever for Tucson girl, 9

2013-08-18T00:00:00Z 2013-11-02T15:34:09Z First day of school is first school day ever for Tucson girl, 9By Angela Pittenger Arizona Daily Star Arizona Daily Star

“One, two, three, eyes on me,” Kellond Elementary School teacher Elizabeth Egan chants to get her kids’ attention.

“One, two, eyes on you,” they respond.

It’s typical beginning of third-grade stuff. Introductions. Circle time on the rug.

Azayliah Dezerie Perez  — Zay for short — rocks slightly in her place. Her deep brown eyes take in everything — the owl decor, the bright bulletin boards, the other students.

Mrs. Egan turns her way.

“It’s a miracle Zay is here,” she tells the class. “Zay had leukemia, a form of cancer.”

Some kids gasp. Eyes shift from their teacher to their rail-thin classmate, her super-short black hair held in place by a silver headband that matches her sparkly leggings.

With a little prompting, she offers a lesson that’s far beyond the third-grade curriculum.

“It’s a kind of sickness that’s little black cells that mess up your body,” she begins softly. “And you have to take medications and go on machines and lots of needles and other stuff.”

Mrs. Egan asks the class to help Zay feel comfortable and welcome.

“She’s spent a lot of her life in the hospital.” She turns to Zay and smiles. “We are so glad you are here to learn and make friends.”

Next it’s time to learn a new song. Mrs. Egan sings the rhyming lyrics, and then asks the students to join.

“Ram Sam Sam ... Ram Sam Sam.”

A boy raises his hand.

“My grandma has cancer.”

Other hands shoot up. The kids share their own experiences of family and friends who have been sick or have died from cancer and other illnesses.

“I’m sorry to hear about all of that,” Mrs. Egan says. “Let’s take a moment of silence to send positive thoughts to our loved ones and survivors ... like Zay.

She is a survivor.”

But until now, she has not been a student.

The cancer she has battled since she was 4 years old has made it impossible to attend school with other kids. But in April, she was declared cancer-free.

Today, her first day of third grade, at age 9, is Zay’s first day of school. Ever.

‘Your daughter has leukemia‘

Leukemia. Cancer.

Two words nobody wants to hear, especially when it comes to a child.

But 55 to 60 children in Southern Arizona are diagnosed with cancer every year, said Dr. Emmanuel Katsanis, a pediatric oncologist at Diamond Children’s. Up to 15 of them, like Zay, have acute lymphoblastic leukemia, the most common form of leukemia.

When she was 4 years old, Azayliah, pronounced like azalea, started getting recurring colds.

Her pediatrician diagnosed a virus, bronchitis, ear infections, strep throat. Antibiotics didn’t help.

Eventually the little girl had pain in her legs. Her skin was pale and yellow. She had dark circles under her eyes.

Her mom, Desiree Mendoza, wondered if it could be growth spurts, since she’d been told those could hurt.

But on a family road trip to Willcox, it was clear something was seriously wrong.

The child who was crazy for horses couldn’t muster the energy to walk over and see them.

“She just cried and cried that it hurt,” her grandmother, Angie Mendoza, remembers. “We just turned around and went home.”

At Tucson Medical Center, a pediatrician noticed petechiae — small red or purple spots caused by a minor hemorrhage — on the back of Zay’s legs.

She ordered a complete blood count and delivered the results with tears in her eyes.

“Your daughter,” she said, “has leukemia.”

Leukemia. Cancer.

Her mother’s first thought: “This is all I have, and now she’s gone.”

{h4}Smooth sailing, and then...{/h4}

They were sent to Diamond Children’s at the University of Arizona Medical Center, where Zay was admitted immediately.

“I just want to get my orange medicine,” she kept saying. Every time before, she had gotten the orange medicine and gone home.

Not this time. She was at the hospital for about a month of induction chemotherapy, with the goal of destroying leukemic cells and getting her into remission.

After 28 days, it looked like the intense therapy had worked. She got to go home but had to take two different chemo pills daily, and go to clinic once a week for bloodwork and intravenous chemotherapy. Eventually the visits were extended to once every two weeks.

“It was smooth sailing,” her mother recalls. “We literally thought, ‘We got this. She’s doing this.’ ”

But two years later, the cancer came back.

They went in for clinic, just like always. The doctor checked Azayliah, gave her chemo, and they went home.

Two hours later, the phone rang. Bring her back, the doctor said.

Waiting for them were a social worker, nurses, the doctor and a nurse practitioner. A series of human red flags.

When the doctor sat down, Desiree knew it was bad. He never sat down unless something was wrong.

She put her head in her hands and waited for the bad news.

Most kids diagnosed with acute lymphoblastic leukemia, have an 80 percent chance of survival, Dr. Katsanis told them. Chances after relapse are significantly lower.

{h4}The cure that can kill{/h4}

The second protocol involved radiation and a harsher chemotherapy. Harsh enough that it kills some kids before the cancer does, doctors told Azayliah’s family.

The worst of it came about a year and three months in. Despite being on steroids, which usually stimulate the appetite and pack on pounds, Zay was losing weight.

Eat, her parents kept begging her. But she wouldn’t. She couldn’t.

By the time she was admitted into the hospital for pneumonia, she weighed 32 pounds. At age 8, she should have weighed about 55.

Doctors found a hole in her esophagus, which led to a hole in her left lung. The cause was unclear, but she was put on a feeding tube and had surgery to patch the holes.

Rather than being afraid, Zay was excited. “Finally they’re gonna fix me so I can eat,” she told her mom.

This hospital stay lasted four and a half months, and through it Zay’s little sister, Khaylina, stayed at the hospital every night.

“I had to make her go home to take a break,” their mother says. “Then they’d hold each other and cry.”

Zay was on a couple different types of chemo. One made her sick. Another caused foot drop, difficulty lifting the feet, which made it impossible for her to walk. She got valley fever, which started eating into her bones. This prompted another operation. The surgeon took out a chunk of bone in her foot, and replaced it with cement palettes.

“She’d drag herself everywhere not to be stuck in a room,” Perez said. “She never gave up.”

Her father, Jimmy Perez, says her strength was so awe-inspiring it made him feel small.

{h4}“When is it my turn?”{/h4}

All in all, Azayliah was in and out of the hospital for more than four years.

During that time, four of her friends died — all sick kids in the hospital with her.

Each time she asked the same heartbreaking question: “When is it my turn?”

Her mom was resolute. “It’s not going to be your turn.”

The family’s goal was to hear Zay hit the gong at Diamond Children’s. Every time it rings, a child has finished cancer treatment.

“One day you’re gonna hit it,” her parents kept telling her. “And we hope you beat the crap out of it.”

That day came on April 10. With a clean bill of health, it was safe for her to start school.

{h4}First-day jitters{/h4}

“Do you know about multiplication?” Mrs. Egan asks Zay.

She shakes her head.

“You can write, ‘I don’t know.’ How do you spell ‘I?’ ”

“I,” Zay responds.

The teacher helps her sound out the rest of the sentence as Zay writes in her math journal.

Another student raises his hand and says he doesn’t know multiplication, either.

“It’s OK,” Mrs. Egan says. “That’s why I’m here. To help you learn.”

She brings out a math pre-test and explains it will just be used to help her figure out where everybody is on the subject.

There are nervous jitters and deep breaths all around.

“I don’t want you to get upset about this pretest. If you don’t know any of it, just put your name on it and that tells me something, too,” Mrs. Egan says. “We’ll have a post-test in a few weeks, and you can see how far you’ve come.”

Zay chews her nails.

As the kids work on their tests, the only sounds in the room are the scratching of pencils on paper and some occasional whispering.

Zay is resourceful. She grabs a calculator from her backpack and tries to figure out the math problems.

“Oh, you can’t use a calculator, sweetie,” Mrs. Egan tells her. She stays nearby for a moment to help.

After the pretest, Mrs. Egan leads the kids in a few breathing exercises to “release the stress.” She asks them to close their eyes.

“Put your thumbs up if you feel confident and know you’re going to get this,” the teacher says. “Put your thumb down if you feel like you are lost.”

After all she’s been through, school can’t be that bad. Zay turns her thumb upward.

{h4}Big Head Cuties{/h4}

Azayliah is eager to learn. And excited to be in school. But she knows she will face challenges.

“I’m nervous about not being that smart,” she says the day before school starts. “Because my memory is kind of bad ... and I’m nervous about not fitting in.”

Zay’s formal learning until now has been spotty due to her illness. She couldn’t go to public school because her immune system was compromised. She had some homeschooling between hospital stays and treatments, but her parents admit their focus was on keeping her alive, not drilling her on the multiplication tables.

She didn’t study much, but she did draw. In the hospital, she created her own characters — animals with big heads and eyes on top of little bodies. Big Head Cuties, she calls them.

They’re her vision of all those big heads that leaned over her hospital bed.

“Big eyes used to stare at me saying, ‘Oh my God, what’s wrong with her?’ ” she remembers.

Among the Big Head Cuties is a bunny with a lucky nose. A horse with a lucky horseshoe. An elephant with a lucky peanut.

They make her happy. She shares them with fellow cancer patients, hoping they’ll make kids who’ve lost their hair feel good.

“Kids, when they’re bald, they don’t know they’re pretty,” she says. “All kids are pretty in their own way.”

She’d like to write stories about her Big Head Cuties and put them into a book for her little sister’s class.

But she has a long way to go. She can’t read yet. She knows the letters and how they sound, but has trouble putting them together.

Words like cat are a challenge at this point, her teacher says.

Everything at school is new to Azayliah. Even things like filling in the bubbles on a test.

“That was such an a-ha moment,” her teacher says later. “I wouldn’t have thought to explain how to fill in the bubble because it’s second nature to the other kids.”

Academics may be daunting, but fitting in doesn’t appear to be a problem.

Zay was self-conscious about her short-cropped, post-chemo hair. But other kids have told her they like it, and she already has made friends with a few girls in her class.

{h4}The road back{/h4}

With her cancer in remission, Azayliah only has to visit Diamond Children’s for bloodwork once a month. She won’t be considered cancer free for five years.

One recent day, she and her mom, grandma and aunt sit in the waiting room, talking about that math pre-test.

“I didn’t think I would pass it, but I got two more stars for getting seven plus three and eight plus two,” she says proudly. “I feel really good.”

Patient care technician, Socorro Tautimez calls her name. “Ok, Miss Azayliah, let’s get your weight.”

She gets on the scale. Fifty-three pounds.

The family is escorted to an exam room.

“Any pain?”

“No.”

She sits quietly while Tautimez takes her blood pressure and pulse.

“Tell me. How’s sister doing in school?”

“Good.”

“Are you in school?”

“Yeah.”

They chat about school and meeting friends. Desiree shares good news of an award Zay and her friend Redana Ayers received the day before for picking up trash on their break time.

“You just started school and you got an award?”

The tech leaves, and Dr. Katsanis arrives.

“You look good,” he tells Zay. “You look taller.”

He listens to her lungs and heart.

Next in the room is nurse Sherryann Paul-John, who draws blood through a portacath in Zay’s chest.

“Zay is an awesome girl ... very brave,” Paul-John says. “Through it all, she always had a smile. And she’s been through a lot.”

{h4}‘We’re good’{/h4}

As they wait for results, the family chats about Zay’s time at the hospital.

Eventually she gets the crayons she carries in her purse and starts drawing on paper towels.

She draws a new cat character for her Big Head Cuties collection. She colors a scene with bright flowers.

“The little flower was picked on by the big ones,” she says. “See how it’s little and orange? Well, it grew up to be bigger and more colorful than the others.”

About three hours after the blood draw, the nurse walks back into the room, a huge smile on her face.

She stays standing.

“We’re good,” she exclaims.

Just like that, the dread gives way to relief. And Azayliah goes from cancer patient too sick to live a normal life to just another kid with grownups on her case.

“Zay, have a good time in school, even on days you don’t want to — and you will have those days,” nurse Paul-John lectures her. “You just have to do it anyway.”

Contact reporter Angela Pittenger at 573-4137 or apitteng@azstarnet.com.

Copyright 2014 Arizona Daily Star. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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