A year has passed since Zay’s cancer went into remission.
Since she reached that milestone on April 10, doctors declared her healthy enough to remove the portacath through which her chemotherapy was delivered and blood drawn from her chest. Her school friends threw a party to celebrate the occasion.
This is something Azayliah Perez, 10, has looked forward to since she was diagnosed with leukemia when she was 4 years old. Like any other kid, she wants to run and play without having to worry about hitting her port. And she’s tired of feeling self-conscious about it showing through fitted shirts.
Most important, it’s the next stop on Zay’s journey to a normal life.
“One step at a time,” she says while sitting with her family in the surgery waiting room at University of Arizona Medical Center, “I’m feeling normal and complete.”
nervous and thirsty
Zay sits with her little sister, Khaylina, 7, both in pajamas per Zay’s request, playing and keeping each other occupied.
Each time the door to the pre-operating rooms open, the Perez family looks up, waiting to hear Zay’s name.
“I’m nervous,” Zay says. “And thirsty.”
She hasn’t had anything to eat or drink since the previous night.
Desiree Mendoza remembers the first time her daughter was here to have the port put in her chest.
“The first time was so sad,” Desiree says. “She was so little and when they had to roll her away, it was sad.”
“Perez family,” says a hospital worker as the pre-op doors open.
Zay hugs and kisses her grandma, grandpa and great aunt, and disappears behind the double doors, her parents and aunt following.
goodbye to the port
A menagerie of doctors, anesthesiologists and nurses are in and out of Zay’s room, prepping her for the outpatient surgical procedure to remove her portacath.
Lauren Graff, a child life specialist, gives Zay the option of scented gas or one final injection in her port for sedation.
Zay chooses the gas. Tutti-fruiti.
Next she gets to decorate the mask with stickers. As she does, a doctor walks in.
“Hi, I’m Dr. Quigley, team anesthesia,” he says. “What did you have for breakfast?”
“Air,” Zay says, not missing a beat.
“Good answer,” the doctor says as everyone laughs.
“Hi, I’m Dr. Asimi,” another doctor says as she walks in the room. “What are you gonna say goodbye to?”
“My port,” Zay answers with a quiet smile.
“Ok,” Graff says. “We’re going together, you and me. Will you be OK?”
Desiree reminds the doctors that Zay wants to keep her port. The doctor is a little surprised. Most people don’t even want to see it, she says. But Zay is eager to show her friends at school.
“You’ve been free for what, 14 months now?”
“April 10 made a year,” Desiree says.
“A year! Congratulations,” Dr. Asimi says.
A few minutes pass, as Graff and Zay talk about Peter Piper Pizza.
“Are we good to go?” Dr. Asimi asks.
“I am,” Zay says.
They get ready to roll Zay into the operating room. The family isn’t allowed to follow. Desiree’s eyes well up, as she kisses Zay.
“I love you.”
“I’m OK,” Zay says, reassuring her mom.
The Perez family sits in the waiting room, keeping busy, waiting for updates.
“It should only take 30 minutes,” Zay’s Aunt Stephanie Swengel says, recalling what the nurses told the family. “Unless the vein grew over it. That happens to one in 10 patients, but Zay is usually that one in 10.”
A few minutes later, Graff, the child life specialist, comes into the waiting room.
“She did good,” Graff says. “She fell right asleep. She’s doing awesome.”
The women in the family, including Khaylina, go to the gift shop to see what they can find. They return with a helium balloon for Zay that says, “You Rock.”
It’s been about 30 minutes since Zay went into surgery when Dr. Hoehner enters the room. Surgery is done.
“It looks good,” he says. Desiree and her mom, Angie Mendoza, sigh with relief.
Zay’s dad, Jimmy Perez, and Desiree follow the doctor into the recovery room.
“I see Zay!” Khaylina exclams about 40 minutes later.
Zay is pushed out in a wheelchair, a small blanket wrapped around her small, shivering frame.
“Good morning, my little pumpkin,” Aunt Stephanie says. “You ready to eat?”
Zay nods enthusiastically.
Like they have so many times, they leave the hospital. But this time, it’s with a new sense of hope.
a new normal
Reaching the one-year milestone is reason for the Perez family to be excited. But with their excitement comes trepidation.
When Zay’s cancer relapsed in December 2011, it had been two years since the cancer cells had gone.
Desiree says that even though the chemo was bad for Zay’s body, it was reassuring to know the medicine would destroy whatever was trying to come up. It was a safety net.
“Now that she doesn’t have that, it’s all her body, so it’s scary. It’s scary because as her good cells are growing and everything is doing its own thing, there’s so much more that can happen. And she’s prone to everything. Any type of cancer, tumors. Once you get cancer, your body has opened that door.”
After running around and playing one day, Zay asks her mom if she can do more stuff since her port is out and she is “done with everything.” Desiree asks her what it is she wants to do specifically. “Baseball, like you did,” she tells her mom.
“I said maybe. I don’t want her to get hurt,” Desiree says later. “In that moment, it made me think. We’re just never gonna know if she’s gonna be OK for the rest of her life. She, more than anybody, wants to be completely normal and feel safe like every other kid does, and she’ll never have that. To be worry free. The most she can get is normal.”
Zay worries when she gets body aches and feels tired.
“What do you think it is?” she asks her mom.
Desiree reassures her by telling her she did a lot or hardly slept, until Zay is convinced.
“The way I speak to her, it helps reassure her,” Desiree says.
Despite the worry, Zay embraces her strange, new normal. It’s strange because the little metal piece that has been a part of her since she was 4 years old is gone.
“I don’t feel like a machine,” she says. “I have a normal chest and it’s just kind of weird.”