Reading, Writing & Remission
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When 7-year-old Isabella came to Children's Hospital of Philadelphia (CHOP) for proton radiation to treat rhabdomyosarcoma, her family worried she'd get behind in her school work, lose touch with her peers, and struggle to catch up when she returned home.
Thanks to an innovative program at CHOP, Izzy was able to attend "school" at the hospital every day before her treatment. With teacher Cheryl Osmian's help, Izzy was able to continue learning, keep up with her classmates, have some fun and maintain a sense of normalcy while battling a life-threatening condition.
"We were so thankful that Isabella had the option to work with the school program at CHOP," says Ariane Bihun, Izzy's mom. "It helped her stay on pace with her peers but also gave her a little bit of joy and fun in her days filled with doctors, nurses, pokes, masks and medicine."
Izzy's oncologist recommended that she receive both chemotherapy and proton therapy to treat her aggressive cancer. She was able to get chemotherapy at her primary hospital in Pittsburgh, near her home in Somerset County, PA, but proton therapy was not offered there. Instead, the oncologist recommended Izzy go to the Pediatric Proton Therapy Center at CHOP — more than six hours away — for the directed radiation she needed.
Izzy's parents decided to move their family to New Jersey to be closer to CHOP for her 28 radiation sessions. They anticipated being gone for about two months — just as Izzy would be starting second grade.
Worried, they asked Izzy's oncology team at CHOP if there was anything that could be done to keep her schooling on track. They suggested the Hospital School Program, a unique offering at CHOP that was developed to meet children's educational, social and psychosocial needs while receiving medical attention.
"School is an integral part of childhood and this program allows children to keep learning even when they are sick," says Cheryl Osmian, MEd, a hospital school teacher at CHOP.
The Hospital School Program is a collaboration between CHOP and school districts around the country. CHOP has eight specialty trained and Pennsylvania-certified teachers on staff who work with children in elementary, middle and high school. Six of the eight are certified special education teachers. In addition, the program has two educational coordinators who help schedule teaching sessions and work with patient's home districts.
Not every patient at CHOP is eligible for the Hospital School Program. Those with a severe or chronic illness, such as sickle cell disease, cystic fibrosis, kidney disease, or those who are likely to miss 10 or more days of school (consecutively or intermittently) will be screed for eligibility. Patients who are eligible must be approved by their home school districts before instruction can begin.
Families can inquire about school services through the Hospital School Program email (firstname.lastname@example.org) or a clinician may recommend a patient's participation in the program.
Nearly 80 patients a month receive daily educational sessions with CHOP teachers. While most of the students are inpatients at the hospital, more outpatients — like Isabella — are being considered as the need arises.
"School work has to be secondary to the children's medical issues," says Osmian. "But medical staff are supportive of our work and the positive effect it has on kids. School time is built into their day; it becomes part of their daily routine."
Students meet with teachers individually or in small groups for one hour a day, five days a week. Lessons are held in buildings around the Main Campus.
Hospital teachers work with the students' home school districts to find out what their classes are covering and to ensure the student is progressing in all subjects. Hospital teachers report back to the home district regularly on what areas the student has mastered and which are still in progress.
"We work on everything the child would be learning in school, from reading, writing and math, to science and social studies," Osmian says. "And we try to make the experience as similar to their regular school as possible. We try really hard to get kids out of their rooms — when they are medically able — and to sit at a desk or computer where they can do their school work uninterrupted."
By having a set time and location for school lessons, medical procedures can be built around school and vice versa.
For example, Izzy attended school for seven weeks in a private room at the Pediatric Proton Therapy Center in the Perelman Center each day before her radiation treatment. Schooling was completed first because she tired easily after treatment and her family could take her to their temporary home to rest after therapy.
"Cheryl [Osmian] was great with Izzy," Ariane says. "She knew when to push her to do more and when Izzy wasn't feeling great and to relax a bit on the more complex work."
On days Izzy wasn't feeling well, Osmian encouraged her to use her iPad to play educational games and puzzles. But games or not, Izzy was still learning. In fact, at many times, she was ahead of her classmates back home, her mom says.
"Izzy could be a tough cookie," Osmian says. "Some days she was 100% ready to work and other days she wanted nothing to do with school." If Izzy wasn’t feeling well, she had trouble concentrating, Osmian says. But other days, Izzy looked forward to school because she "really wanted something to distract and challenge her. I took my cues from her to determine what we could accomplish at each session."
To mirror what students in their home districts were working on, the hospital teachers do many of the same activities, including fun activities like celebrating the 100th day of school and Dr. Suess' birthday.
"They may do an activity with us [at the hospital], but we share it with the school so they can be part of their home community too," Osmian says. "Teachers can see what the students are doing, and their classmates can feel invested in the peer who is missing."
By following the same lesson plans as teachers back home, Osmian says, the hospital teachers set students up for success when they return home after treatment. "We want it to be a seamless transition back to school," she adds.
After two months in the Hospital School Program, Izzy returned home to Somerset County, PA, where she was homeschooled for the remainder of second grade to protect her weakened immune system. In September 2018, Izzy began third grade with her peers and has done remarkably well.
"If Izzy didn't have the opportunity to participate in hospital school, she may have had to repeat second grade, she's wouldn't be with any of her friends and she'd likely be very depressed," Ariane says. "Instead, she didn't miss a beat. She's getting all A's, she's with her friends, and her cancer is in in remission."
Now feeling better, Izzy is back to her spunky self, her mom says. Her hair is growing back, she's playing soccer and basketball, and hopes to start gymnastics and cheerleading this summer. She returns to her oncologist in Pittsburgh every three months for check-ups, and annually returns to CHOP for re-evaluation of the radiation therapy.
"I can't say enough how wonderful the CHOP School Program was and how thankful we are that was available to us, " Ariane says.