CORPUS CHRISTI, Texas — Seventh grader Yaneli Ortiz often is left weak by the chemotherapy treating her leukemia.
Fourth grader Jessica Gamez has trouble retaining what she's learned as a result of her lupus.
And on a recent Thursday morning, high-school senior Damian Eliserio's cystic fibrosis is keeping him in his room.
On days like this, Driscoll Children's Hospital Lead Teacher Marie Soza packs up her laptop, her clipboard and a pencil, and goes to him.
No two days are ever the same for the teachers at CCISD's satellite school in the only free-standing children’s hospital in South Texas. They find themselves thinking outside the box most of the time, which comes with the territory when students range from first-graders to seniors in high school. They all come in with IV poles in tow.
"We just kinda go with the flow," Soza said.
Soza and co-teacher Sumer Duhon are the hospital's two fully certified CCISD staff teachers. Soza, who has degrees in special education and general education, taught middle-school special education earlier in her career. She joined the Driscoll program 12 years ago. Duhon joined the program this year. They're often helped by retired teachers who volunteer their time at the hospital.
In their eighth-floor classroom on a recent Wednesday morning, Soza settles in to help Yaneli with math; Duhon packs a bag and heads downstairs to work with a fourth grader in her hospital room; volunteer teacher Joseph Toomey works on science with Jessica; and Damian is using Soza's cell-phone calculator to work on his Algebra II test.
After each has made enough headway in their work, Soza suggests a game of Uno! Attack.
"We try to do work first, and then arts and crafts if we can get away with it," Duhon said. "And it's fun. We're a children's hospital. We're not gonna sit here and make someone, you know, write a whole seven-page-long paper. They're here for a reason. We try to lighten the load just a little bit, if we can."
Going with the flow
Going with the flow is a necessary philosophy when each child's diagnosis presents a set of specific challenges.
Yaneli's leukemia had ravaged her so completely when she first came to Driscoll Children's Hospital that her medical team still doesn't know exactly how much it affected her neurologically. Nephrology patients, such as Jessica, Soza said, usually have memory issues.
"(So it's) trying to figure out to get them to remember the best way," she said. "So (with) the kidney kids, it's 'OK, lets get out your multiplication charts,' because they're not gonna remember (their times tables). Why am I gonna ... force them to learn multiplications when their brain's not gonna do it? So it's 'Let's get the chart out.' That's one less stress. Let's not stress over that."
And sometimes, having the same condition doesn't always produce the same side effects from one child to the next. For example, two children can both have cystic fibrosis, but one patient may have stomach issues, while another doesn't.
"You (as a teacher) have to figure it out," she said.
In her 12 years at the school, Soza has figured out a lot.
She knows that the discoloration in Yaneli's lips means the teen's white-blood-cell count is low that day; Soza calls it a day on Jessica's math coursework when she sees the quiet fourth-grader subtly holding her stomach; when Damian sits down to do his algebra test, she moves a trash can next to his chair -- just in case that morning's breakfast doesn't agree with him.
"You have to motivate them to do something," Soza said. "Not just 'OK, here's your work. Everyone get your notebooks out, this is what we're workin' on. Sometimes you're like 'OK, how was your night? Did you have a rough night? Did you vomit? How's your stomach feeling today? And you just kinda work your way into doing things."
Working with Damian in his room requires preparation. She goes downstairs ready to review the Algebra II work he'd done the previous day, and his astronomy schoolwork, but she pokes her head into his room first and asks if he's up for visitors.
In the average person, mucus works as a lubricant, flowing with minimal notice and effort. Damian's cystic fibrosis causes mucus in the ducts and airways of his lungs and pancreas to be thick and sticky, plugging them up. Part of his respiratory therapy includes a vest, worn for 30 minutes twice a day, that creates a high-frequency vibration to break up the excess mucus. Coughing to force it out at regular intervals allows him to breathe somewhat normally.
The process can leave patients exhausted, but he says he’s OK.
After 12 years of teaching Damian, Soza knows the drill: She proceeds to put on the paper robe, mask and gloves required to enter the immunocompromised teen's room.
"Regular teachers don't get to do this," she said, with a smile.
After Damian got to a stopping point with his algebra Wednesday afternoon, his next stop was for a different kind of testing. On Thursday, "Ms. Marie," as the students refer to her, and Damian swap ultrasound stories.
"I just had one of those done on my kidney," she said. "It's kinda weird right? They put a gel on you, and it feels real funky. Was the gel cold, or did they warm it up?"
The dialogue opens the quiet teen up, eliciting nods, smiles and giggles. They agree that cold ultrasound gel is bad.
Soza and Damian have been through a lot together. He says he’s known her “for as long as I can remember.”
A "frequent flyer" at the hospital, he's often on his own because his mother works long hours to keep things afloat at home, so the hospital staff does its best to keep his spirits up.
"When you're here all the time you get to know everyone, so that's the positive thing," Soza said.
"Laughter's a good healer. When you're laughing, everything's better." -- Joseph Toomey
Damian, who is happy to let Soza speak for him, nods.
“The nurses spoil you,” she teases.
He giggles in acknowledgment.
"The nurses and the staff make it easier," he said.
Soza admits algebra isn’t a specialty of hers, so she spent part of the previous night at her math-teacher neighbor’s house learning to teach Damian what he needs to stay current with his schoolwork.
Soza’s paper robe rustles as she leans over to review equations with him. She reads the problems to him through the paper mask covering her nose and mouth, pointing at each part of the equation with a blue gloved finger.
When she sees him starting to tire, she tells him she’ll be back to get him at 1:30 p.m.
“Lazy is allowed in the mornings,” she said. “In the afternoon, it’s not allowed. Mornings are hard, because you don’t sleep at night. They wake you up all the time. Mornings are hard. Especially when you’re a teenager.”
"Which color?” asks Soza, holding out one orange, one brown and one green dry erase marker.
Yaneli looks at her blankly.
“You don’t always get very many choices up here at the hospital,” Soza said. “Like when you’re down in the clinic, do they say “Oh, do you want this medicine or do you want that medicine today?”
Yaneli shakes her head “No,” giggling.
“So here, that’s our little ways of giving you choices. So, you get to pick,” she said, still holding out the markers for the teen to choose. “All those little choices add up, right?”
Yaneli takes the green one.
Soza tells Yaneli they’re going to review for a bit, first, because “it’s been a while, and your brain has fog in it.”
The “fog” Soza refers to is what is normally referred to as “chemo brain,” when patients undergoing chemotherapy experience lags in memory and brain processing speed.
They work through a problem, and Soza likes what she sees.
“That’s good remembering, because it’s been a while,” she said, encouragingly.
Yaneli tells Soza her occupational therapists were doing inequalities with her as memory exercises.
"I think you’re doing really good remembering,” Soza said. “Don’t you? Can you tell the difference from when you started?”
When she first came to Driscoll Children’s, Yaneli was in bad shape. She’s progressively gotten stronger, but like all cancer patients, the treatments take a lot out of her.
Just a week ago, she came to class in her hospital gown and robe. She was having a bad day medically. After about 45 minutes, Duhon tells her to go back home and rest.
“You’re not gonna do good work if you don’t feel good,” Duhon said. “You’ve gotta play on how the student feels. When she walked in, I immediately knew (she wasn’t feeling well.)”
It’s for days like those that Yaneli’s mom thinks homebound schooling is a better option for her seventh-grader. Soza explains to Yaneli what that means: She wouldn’t have to leave her home at the Ronald McDonald House to come to class, but it also means only four hours of instruction a week as opposed to the five days a week she gets with Soza and Duhon on the eighth floor.
Yaneli looks dismayed.
“The kids need to understand the advantages and disadvantages of both,” Soza said. “But her family encourages education. She’ll be fine.”
This week, Yaneli is wheeled in wearing a headband with a large yellow flower and an orange feather. Her black-and-white tie-dye shirt features a gold glitter unicorn in the middle with the word “Unique” stenciled in, and her black leggings have the word “love” written all over them.
This, Soza said, is the real Yaneli.
Yaneli spent her 13th birthday in the hospital and celebrated an early Thanksgiving there as well thanks to Triumph Over Kid Cancer’s recent Thanksgiving celebration. She lights up when Soza asks her about the DJ and the party.
Her eyes register their approval when Soza says they’re done with inequalities for the day, and wheels her over to the table where Damian and Jessica are sitting, for a few rounds of Uno Attack.
On a recent Wednesday afternoon, Jessica is working on science with volunteer teacher Toomey. "Mr. Joe" reminds her to check her science experiment -- a clear glass of water that's been sitting on a window sill of the hospital's eighth-floor classroom with plastic wrap rubberbanded around the top.
She is studying water cycles, and the experiment is a visual representation of the process she drew on a piece of paper in a previous session that shows how the water and the sun team up to make rain.
With some prompting from Mr. Joe, the shy girl from Mission explains her drawing:
“Mr. Joe: What is this that's here?
Jessica: The water.
Mr. Joe: A lake or the Gulf of Mexico. What's this guy right here?
Jessica: He's the sun.
Mr. Joe: What is this guy doing?
Jessica: It heats the water.
Mr. Joe: You got it. And what happens with the water that's heated?
Jessica: It goes up ...
Mr. Joe: Into the ...
Mr. Joe: And what happens to the clouds? Do they move?
Jessica: They move.
Mr. Joe: From hot of the sun into the ...
Mr. Joe: But what makes it rain? The clouds move. What happens to the temperatures? Do they go up or down?
Mr. Joe: The temperature goes down, it gets colder. And when it gets colder, what happens?
Jessica: It snows. Or rains.
Mr. Joe: It snows or rains, either one.”
Just then, an alarm on Damian's IV pole goes off across from them.
“You beat the buzzer," Mr. Joe teases. "Pretty good."
Jessica has lupus; and as if that wasn’t enough, she has pancreatitis, which she said makes her belly hurt when she eats.
After Mr. Joe and Jessica finish reviewing her science, they move onto math. Jessica is the only one of the three in class that day who actually likes math. Mr. Joe tells her to let him know when she needs a break, but she continues working on her double-digit multiplication until he finally suggests one.
This is her second time at the hospital this semester, Duhon said, but the shy girl says she likes coming to school with Duhon and Soza. It makes her feel more normal.
“I get to do stuff I didn’t get to do in my other school that I missed,” Jessica said.
Soza says the children they teach will never be completely caught up when they return to their schools – Soza and Duhon’s goal is to help them stay as current with their schoolwork as their illnesses allow.
“Jessica is doing double-digits this week,” she said. “They’re gonna be moving on after Thanksgiving, so if we didn’t work with her, she’s gonna fall farther behind.”
Jessica has missed a decent amount of class at home this year. She says she doesn’t have any friends – well, she had one, but she recently moved away. She makes the most of her situation.
“I play outside with my dad outside because my brother and sister are at school,” she said of the days in Mission when she can’t go to school. “I didn’t go to school because I was sick. He makes me laugh. He makes funny faces.”
“It takes a certain personality”
Volunteer teacher Toomey is patient, having had experience teaching children who require more attention. He taught visually impaired students during his career with the CCISD. As soon as he retired three years ago, he started volunteering at Driscoll.
He prefers the one-on-one instructional style the CCISD satellite at Driscoll affords. He said it leads to a more relaxed atmosphere, learning and otherwise.
"We get to joke around a little," Toomey said. “Laughter's a good healer. When you're laughing, everything's better."
If the teachers run into material with which they’re unfamiliar, they’re upfront about it.
“I’ll tell them, ‘I have no clue,’ ” Duhon said, throwing her hands up. “Let’s find out together.”
Duhon once let a former patient do her makeup as a reward for studying hard.
Soza said that over the years, when it comes time to hire a new co-teacher, empathy is among the traits at top of her list.
“It takes a certain personality,” she said.
Soza lost her 6-year-old son to cancer at Driscoll. Duhon stayed there for about a month as a child with pertussis and pneumonia. Both are able to empathize due to their experiences.
“It’s hard,” Soza said, of being a kid in the hospital. “(In Damian’s case) You’re a senior in high school. You’re missing out, and so you’re not a normal kid. You’ve gotta wear that vest twice a day. He has to take medicine every time he eats.”
So to make their students feel a little more typical while they’re at Driscoll, they engage them in their hobbies. They play games. They play Uno Attack.
Making it work
The children take turns hitting the button and cringing, anticipating a flood of cards shooting out at them. They’re stumped when, after a few presses, no one’s been hit yet.
Soza begins to consider the fact that her favorite Uno machine might finally be dead after 12 years.
“That machine,” she starts, “The laughter we’ve had over playing Uno Attack. You can definitely hear us down the hall.”
They have others, but this one has history. She says she might have to bury it, she’s so sad.
“We have a really hard time throwing away stuff. We will keep it until it can not be used,” Duhon said. “We’ll fix it. We don’t care. We’re both really frugal people. We have to be.”
A lack of funding briefly ended the program in 2004, but it was restarted in 2007, and Soza was brought on.
The two each only get $60 a year from CCISD for supplies, the same as all other CCISD teachers. They use the money to buy things they need such as manila folders, and other supplies. Driscoll and corporate donors and sponsors help them cover the rest.
Soza said they’re still using a supply of notebook paper donated by Walmart a couple of years. She said Walmart donated so much that it was delivered by the palette. Whataburger gives them drawstring bags for the children to carry their school things in.
But through community and corporate donations, the school is a fully funded classroom on the hospital's eighth floor, outfitted with books, school supplies, and most things a typical classroom has.
The next day, Jessica comes up to the eighth floor dressed, as opposed to in her hospital gown and robe like the day before. She and her mom, who’s been with her while she’s been at Driscoll, have some news.
“Hey! Good news! She gets to go home today,” Duhon tells Soza, as she walks in from a meeting.
“Woo-hoo!” Soza says excitedly. “Look at you! That’s really good news.”
Jessica smiles brightly.
“She’ll be home for Thanksgiving,” Duhon said. “This is our last little school day before (she leaves … We’re super-happy. Very excited.”
Soza asks Jessica if she did her previous night’s “homework.” Jessica nods yes.
Since they’re studying water cycles, Soza had Jessica watch the news and write down any time the meteorologist talked about water in any form.
“They say it’s gonna fog,” Jessica said.
“So why do you think it’s important to watch the weather?” Soza asks. Other than what we have to wear? So my daughter’s gonna fly somewhere today. Do you think it’s important for her to watch the weather?”
They’re not sure when Jessica is being discharged – morning or afternoon – so they review a little of her schoolwork and the Duhon and Jessica set to making a Christmas wreath until it’s time for her to go home.
They like to do things like that, Soza said.
“So when you go home, you remember there’s good things here,” she tells Jessica.