Reading, Writing, and Recovery
On-site Hospital School and Follow-up Program
Keeps Patients on Academic Track

BY THERESA JOHNSTON

SPRING 2008 -- When Jess Chiang was undergoing chemotherapy for leukemia five years ago at Lucile Packard Children’s Hospital, he was determined to get some exercise and keep up with his eighth grade classmates. So every weekday--no matter how he felt--he forced himself out of bed and up to the third floor. There he attended the Packard Children’s Hospital School--the only fully accredited program of its kind in the state. 

Jess Chiang, 19, kept up with his studies by attending Packard's Hospital Schoool while undergoing treatment for cancer. Now in remission, he's a freshman at Ohlone College in Fremont.

''A few steps were like walking up a mountain; I could feel my heart pumping really hard. But I always took every chance I could to go,'' says Chiang, now a 19-year-old student at Ohlone College in Fremont, Calif. ''I wasn’t scared of the disease, but I was really worried about not graduating with my peers. When I talked with the Packard teachers and saw how they would be able to help me and teach me, it took a load of stress off my shoulders.'' 

Packard Children’s Hospital is known for its exceptional medical
care--highly trained and compassionate medical staff, and the best and latest technology. But its attention to the needs of children and their families doesn’t stop there. Studies have shown that for medically fragile youngsters, maintaining some kind of school routine, both during and after hospitalization, is a vitally important part of the healing and growing process. 

''Our patients need to be able to participate in activities, such as school, that all other children participate in,'' says Colette Case, program director for Child and Family Life Services at Packard Children’s. ''It’s our job to ensure that children have the resources they need to be successful.'' 

Jeanne Kane (left), coordinator of the HEAL Program, and Cammy Sunde, director of the Hospital School, help patients achieve academic success both in and out of the Hospital.

Packard Children’s Hospital School is unusual both for its longevity and its high academic standards. The program dates back to 1924, when staff from the old Stanford Home for Convalescent Children asked the highly regarded Palo Alto Unified School District (PAUSD) for help educating long-term patients. In those days, children might attend the school for a year or more as they recovered from debilitating infectious diseases such as tuberculosis and polio. Today’s students are more likely to have chronic illnesses or congenital problems that require sporadic inpatient stays and/or outpatient care over a period of years. Some youngsters attend the Hospital School periodically from kindergarten all the way through 12th grade. It’s not unusual for grads like Chiang to come back for a visit. 

Like a Neighborhood School

Valerie Retiz, 16, works with teacher Kevin Danie.

''It’s different every day, and it’s challenging every day,'' notes the School’s buoyant director, Cammy Sunde, a former Palo Alto High School special education teacher who now works with the Hospital’s elementary age students. ''You never know who’s going to come through the door.'' 

Sunde’s hospital classroom resembles that of any neighborhood school:
a brightly colored learning space filled with pint-sized tables and chairs and decorated with children’s watercolor leaf paintings. Next door is the middle and high school classroom, with teen-sized furniture, heftier textbooks, and a whiteboard often covered with trigonometry equations. 

During regular school hours--9:30 to 11:30 a.m. and 1:30 to 3 p.m.--
Sunde and her three PAUSD colleagues work with five to 10 or more students a day, helping them individually with assignments sent by their home schools or teaching new material from district textbooks. Some pupils are local kids; others are from foreign countries. Some just want to pass high school proficiency tests, while others are aiming for admission to elite Ivy League colleges. The school also serves siblings of patients, teenage parents of hospitalized infants, and children who have a parent hospitalized at Stanford Medical Center.

Ginger Harkness, elementary grades aide, helps Nancy Lopez, 7.

Between their third-floor class sessions, Sunde and her fellow teachers roam the Hospital offering gentle half-hour bedside lessons. If a child feels too sick to participate, the teacher might put down her clipboard and simply read aloud--
anything to keep the routine going. As Sunde explains, ''It’s very important to have the day structured so that children can go to school, even if it’s only for a couple of hours. School is part of their routine at home, and as a part of the Hospital routine, it gives them the message that they will get well.'' 

Her colleague, high school teacher Thayer Gershon, says children get that message. She recalls one bedside tutoring session with a Nevada teenager who was awaiting a kidney transplant. When she walked into his hospital room, he was throwing up into a bucket. ''At first he was angry at me for being there,'' Gershon says. ''Then he looked up and said, 'I guess there’s a reason you’re doing this.' His thinking was, 'If you’re taking the time to teach me, you must think I’m going to live through this.'''

Cured and Successful

David Ripke, 16, teams up with high school aide David Berry.

Packard Children’s assistance to school-age youngsters doesn’t end when they’re discharged. Five years ago, the Hospital started an innovative program called HEAL, short for Hospital Educational Advocacy Liaisons. As coordinator Jeanne Kane explains, many hospitalized children can use extra help when they get back to their regular classrooms. Maybe they need to be seated up front so they can pay attention better, or perhaps they need home tutors, frequent daytime snacks, or extra time on exams. 

By federal law, parents who can provide evidence that illness, treatments, or medications are adversely affecting their child’s educational performance have a right to ask the school to evaluate the child. If students are deemed eligible for special education services, schools must provide written Individual Education Plans (IEPs) spelling out what accommodations will be provided. Yet not all parents feel confident requesting these tests or negotiating these plans on their children’s behalf. 

To help, Kane and her small staff can put together literature packets for parents and teachers that explain how a specific illness or medication might affect a youngster’s ability to learn. They can test children while they’re in the Hospital and after they’ve been discharged, to determine what their abilities are and which accommodations might be appropriate. They also can attend IEP meetings by phone or in person, sitting on the parents’ side of the bargaining table.   

Maia Evrigenis, 13, discusses a concept with high school and math teacher, Kathy Ho.

Donna Felix is particularly grateful for Kane’s services. Eight years ago, her daughter, Kayla, was diagnosed with a brain tumor just as she was starting kindergarten. Before the illness, Kayla was reading at the first- and second-grade level. After surgery and six weeks of radiation, she had to re-learn everything. As Donna recalls, ''Her memorization wasn’t good at all. She needed extra help for reading and math.'' 

By testing Kayla, Kane was able to pinpoint what her learning challenges were. Then she called the elementary school in Bakersfield and explained exactly what kinds of accommodations the little girl would need, including a calculator for math lessons and a classroom sound system to make up for her hearing loss. She repeated the process recently when Kayla went to junior high. 

''I can’t imagine how we got along before HEAL,'' says Kayla’s pediatric neurologist, Paul Fisher, MD. ''For our families with children affected by brain tumors, we always say that our goal is 'cured and successful.' HEAL lets us reach that goal.''  

Classmates Learn, Too

Another popular service that Kane provides involves going into Bay Area classrooms to talk with the teachers and peers of medically fragile children. As she explains, ''A lot of studies show that when someone goes to the school and talks with the patients’ classmates, the kids adjust better.'' 

Miranda, 9, is currently receiving treatment for a soft-tissue tumor. With support from the HEAL Program, she has been able to continue attending her elementary school in San Mateo.

That certainly was the case with Miranda, who was diagnosed last fall with a soft-tissue tumor in her wrist. At first, the San Mateo fourth grader was reluctant to tell her classmates about her illness and treatment, which involves 42 weeks of radiation and chemotherapy. Then she met Kane, who gently persuaded her that ''taking cancer to school'' might be a good idea after all. 

At their first stops--Miranda’s own fourth-grade classroom and her older brother’s fourth/fifth grade class--the girl stood in the back and watched while Kane made a presentation about cancer and answered questions. Then they visited her little sister’s kindergarten class, where Miranda helped present a ''Captain Chemo'' felt board lesson. By the time she got to her peers’ fourth-grade class, Miranda was eager to tell her friends about the illness herself. 

''It was so amazing to see,'' Kane recalls proudly, ''She went from not being very powerful and not being in control, to being able to say, 'Hey, you have a question? I’ll answer it.'' For an educator like Kane, that was a high point--one more example of what makes Packard Children’s a special place.