Children’s Hospital Colorado offers Medical Day Treatment for sick … – The Denver Post

J.J. Krueger, 7, is wishing his new pencil was also a light saber when his teacher announces it’s time for a dance-off to wrap up their classroom party.

The second-grader, stiff and in pain because of a rare disease that makes his skin clump and blister, hangs back by the windows, smiling at his classmates. Daisy Walsh, 10, a cupcake hat covering her short black hair as it grows back after chemo treatments, clasps hands with the teacher as the speakers blast Michael Franti: “This one goes out to you and yours worldwide … I know one thing, that I love you.”

And Yovany Gonzalez, 8, pushes his walker to the side for a few moments to sway to the beat, stepping from one foot to the other and shaking his arms. He uses a walker most of the time at school because radiation after a brain tumor damaged his brain stem.

They are students at Medical Day Treatment, a school inside Children’s Hospital Colorado for kids who are too sick, or too “medically fragile,” to attend regular school.

Expand

They enrolled here because they missed too much school for doctors’ appointments, physical therapy, chemotherapy or dialysis, or couldn’t last a seven-hour school day without needing a nap, or needed a nurse nearby to check the g-tubes or intravenous lines inserted into their stomachs and arms. Some are waiting for transplants. Many of them — including J.J., whose condition makes so much skin grow on his hands and face that it falls off around him but so little elsewhere that parts of him are nearly down to flesh — were bullied.

Here, on some level, they are all the same. It’s normal to pop out of class for a dose of medication at the nurse’s office or a counseling session, or to leave early to walk to an appointment with a Children’s Hospital neuro-oncologist or visit a hyperbaric chamber. It’s OK to take a nap for an hour and then return to your desk.

“Everyone has their issues,” said J.J.’s mom, Jenny Krueger. “Every child has their own fight to fight each day. He would rather be there than at home any day. He would go on Saturdays and Sundays if they would allow him.”

J.J. started second grade at the school last fall after the Kruegers learned about it from his pain management counselor. He was home-schooled for kindergarten and first grade, partly because his open sores make him susceptible to infection but also because other kids made fun of him when he visited the playground at the school his three older siblings attend. The worst was when a group of children ganged up on him and made “nasty comments.” “It was devastating,” his mom said.

Attending school with other children with chronic medical issues has made J.J. more confident. Before, when people pointed or stared or asked questions, he would “slink away” and his mother would stand up for him, she said. Now J.J., propped up by his new classmates who have blurted “What are you staring at?” to strangers on his behalf, stands up for himself. “I was born with it and no, you can’t catch it,” he will tell people at the store or the park.

J.J. uses all of his energy for school, so much so that he spends many nights on the couch, crying. There is no cure for epidermolytic hyperkeratosis, which makes him cramp up because his skin is so tight around his elbows and knees. He’s a whiz at math, but struggles in writing because his hands are thick with skin that cracks and blisters. He said he wants to go to school at Medical Day “forever,” or at least until he becomes a rock star.

Students play a game in P.E. ...
J.J. Krueger, 7, and classmates play a game in P.E. class. The second-grader with a rare skin disease said he plans to become a rock star.

The average length of time students attend Medical Day is about one year, because from the first day, the teachers, nurses and psychologist who work there are rooting for them to return to regular school. But there are exceptions. Some are never healthy enough to leave.

One little girl, “a bright light” and the “heart of the program,” attended for eight years before she died of a blood disorder. A boy who attended for two years died of a brain tumor that, toward the end, was growing outside his skull. He came to school until about three weeks before his death, because he loved it there. “It was really a struggle for our kids,” said Kay Troxell, who has worked at the school 19 years and is now program manager. “It makes the kids look at their own mortality.”

Their deaths were among eight student deaths in the last two years.

The entire staff of 10 attends every funeral, gathering afterward for lunch or happy hour to cry together. Then they return to work the next morning.

“It’s not an easy part of the job,” Troxell said. “There is something sacred to be with families and kids at the end of life. It’s a privilege, and I feel honored that I have been able to be part of that.”

A former student with an autoimmune disease was a skier before he grew so sick he needed oxygen and a gastronomy tube for nutrition. On a field trip to ski at Vail, Troxell trudged through the snow in heavy boots, loaded with children’s belongings. “I remember being like, ‘Oh, my gosh, I feel like a dang Sherpa,’ ” she said.

The boy got to sit-down ski that day. Later, at his funeral, ski medals he earned were around his neck. Troxell vowed she would never complain about a field trip again, not even when unloading the school’s three vans of walkers and wheelchairs and medical equipment when they arrive at a museum or Boondocks for an obstacle course and bumper cars.

“My job is about 90 percent happy, 10 percent sad, and the 10 percent sad is really sad,” she said. “I really consider Medical Day Treatment a joyous place. We dance and sing and have dance parties, and they learn a lot.”

Dante Alderson, 17, a junior in ...
Dante Alderson, 17, a high school junior who has a disease that affects his large intestine, works with teaching assistant Darlene Farlow on math at Medical Day Treatment last month.

Teachers at Medical Day work for Aurora Public Schools and students are enrolled in the school district, though about half of them live in Denver and its suburbs. The children have private insurance or Medicaid government insurance that covers tuition.

Schools exist in hospitals across the nation, though Medical Day is a rarer example of a partnership between a local school district and a major hospital. National Jewish Hospital in Denver has a K-8 school on its campus for children with chronic medical conditions, most commonly asthma, who have fallen behind in regular schools. The school has about 90, mostly low-income students whose tuition is funded largely by the hospital and its donors.

Medical Day has 22 students, with a capacity for 30. The school inside a five-story building on the Children’s Hospital campus in Aurora is divided into two classrooms, one for elementary kids and the other for middle schoolers and high schoolers. A row of student lockers, decorated with names and stickers, lines the hallway near a nurses’ station, an office used to store medicine, and rooms for mental health counseling or therapy sessions.

Yovany, who now has thick, long eyelashes, arrived to his first day of school at Medical Day wearing a red bow tie, black-rimmed glasses and “not a lick of hair on his body or his head,” said Kerra Zambrano, who has been a teacher at Medical Day for nine years. His health declined last year, and they worried his tumor was back, but it turned out radiation treatments had damaged his brain stem, making it hard for him to walk. He missed school for two months and returned to class in a wheelchair. Soon after, another boy with a brain tumor died.

This fall, Yovany told his mother: “I don’t want to go to school where my friends die.”

But he returned to school and has been improving, no longer needing the wheelchair but a walker instead.

“Yovany is pure joy and love,” said Zambrano, the kind of teacher who belts out songs during their dance parties and has two shelves above her desk filled with gifts from her students. “He is just one of those people that sees nothing but joy in the world.”

The problem with working at the school for so many years, Zambrano said, is that she has “gotten more knowledgeable about medical things, which can be scary, because ignorance is bliss.”

“My goal is to push kids; their job is to learn. They know that. It’s the same as any classroom. But I’ve learned there are some things more important than others.”

In other words, she doesn’t react the way some teachers might when children don’t do their homework. When Daisy, who has battled cancer in her brain and then her spine since kindergarten, gets worn out, Zambrano asks her if she wants to rest.

“My heart gets nervous. I don’t want something to happen to her or to any of them.”

Daisy was leaving her old school nearly every day at noon because she was too exhausted to keep her eyes open. The other kids didn’t play with her because she was fragile, and after brain surgery, Daisy lost the confidence to talk to people, said her mom, Natalie Walsh. Now learning to carry on a conversation is part of Daisy’s school day. Before she began meeting weekly with a mental health therapist at Medical Day, the only time she had ever “talked” about the cancer was to her pen pal — a dog.

“She is enveloped in love, compassion and understanding every day she goes to school,” Walsh said.

After brain surgery, the cancer returned in 2015 with multiple spots in Daisy’s brain and spine. She had surgery again and just finished chemotherapy in January. Her hair is almost long enough for the tiniest of pony tails. She wears tutu skirts and fashionista boots, and spends much of her time away from school making cards and crafts for her classmates. She brought her teacher a fake diamond ring for Valentine’s Day.

“We’re afraid,” her mother said. “We just hold on to hope and we pray every single night. Every single day, she is a gift to us.”

Natalie Walsh helps her daughter Daisy ...
Natalie Walsh helps her daughter Daisy Walsh, 10, put on her coat before heading to school at Children’s Hospital, Feb. 15, 2017. Daisy is a fourth-grader who has had two surgeries for cancer, one in her brain and one in her spine.

Part of the curriculum at Medical Day is teaching students how to manage their disease — to give themselves insulin, take the proper dosage of medication, learn to select healthy foods from the hospital menu or create a regular exercise routine. Some children were referred to Medical Day because they were failing out of their old schools due to asthma and diabetes. And once they learn to keep their diseases under control, they can return to regular classes.

Older students often are in headphones, working by laptop at their own pace. Ian Greer, a high school freshman from Las Vegas who is living at Ronald McDonald House as he awaits a heart transplant, will attend school at Children’s “until the call comes.”

“I’m just really stressed about the whole situation,” he said, taking a break from algebra.

Eli Schneckloth, 12 and ready to move up from the noisy, elementary classroom, wants to leave Medical Day at some point because he’s “never done” middle school. But his case is complex — he can’t eat food or liquid because of a disease called eosinophilic esophagitis, an inflammation of the esophagus. All of his nutrition and hydration comes through a central IV line. He’s small for his age, about the same height as his 9-year-old brother, and couldn’t physically keep up with his classmates at regular school. He is tired and in pain much of the time.

Eli Schneckloth, 12, a 6th grader who is allergic to many types of food and has to eat from a central line, attends a school, at Children's Hospital, called Medical Day Treatment, Feb. 06, 2017.
Eli Schneckloth, 12, a sixth-grader who is allergic to food and receives nutrition through a central line, works on math at Medical Day Treatment last month.

“You are here to learn about your disease or possibly cure it, so people come and go all the time,” he says, working on distributive properties in math class, in a bean bag with an iPad. “You can’t be closed off here. If you grow close to someone and they leave, you can’t stay closed off because you won’t make a new friend.”

Eli’s mother, Ella Schneckloth, loves that her son has such close friends at Medical Day, kids he texts on weekends. They bond over things other children wouldn’t even know about, like keeping track of who counted the highest before slipping into unconsciousness before their most recent surgery.

“Every kiddo there has their own struggle, and it’s different for every one of them,” she said. “It gives them perspective instead of being the only one who can’t do something. They’re in it together.

“It’s his tribe.”

Comments

Write a Reply or Comment:

Your email address will not be published.*