Providing family support, more than just medically

Having a painful, chronic disease often means missing many school days due to hospitalizations.

The St. Louis Children’s Hospital hematology/oncology team held a Children’s Sickle Cell Back-to-School Bash recently to help the families of their patients prepare for a successful school year.

“Kids and families can feel defeated after falling so far behind in school,” says Aisha Johnson, pediatric hematology/oncology education liaison. “We want to give them a good head start and focus on the positive.”

The bash, held in late summer, featured:

• free school supplies for grades K-12
• health and wellness education
• community resources
• prizes and fun

Sickle cell disease is a genetic ailment that causes red blood cells to have an abnormal shape, resulting in blood flow problems. This can lead to organ damage, pain, strokes, anemia and learning problems. It’s a chronic condition that can change over time, affecting children and young adults’ ability to meet their educational and personal goals.

Johnson oversees the event, now in its second year.

“It feels good to know that we’re making a difference, and for them to know that they’re important,” she says. “And that we care about them as a whole — not just what happens to them medically.”

Johnson and the team support families beyond the medical setting. They do so, for example, through events like the Back-to-School Bash, a summer camp and a sickle cell stroll.

“Kids have the most honest reactions, which I appreciate,” says Claudia Foster, pediatric hematology/oncology newborn screening coordinator. “I love seeing their faces light up about the small things here, like getting their face painted or receiving a brand new bookbag. Whatever we can do for them is great, because they’re amazing.”

Help for families

The fair also included vendors that can help families. For example:

• Vocational rehabilitation services to help people with disabilities get or keep a job: Kids with sickle cell disease may need to find work in the summer, after school or after graduation. An adult in the family with a disability may benefit from this service as well.
• Big Brothers Big Sisters: Families may need a positive role model for their kids. The agency pairs mentors with youths ages 6-18, predominantly from low-income, single-parent households.

“There’s so much stress in the world, and having a chronic disease on top of it is more than challenging,” says Amanda Fuller, hematology/oncology patient care manager. “So, whatever we can do to help them continue to grow and make things better for them is great. We’re fostering great bonds with each other and just building a stronger team.”

The hematology/oncology team faces “good problems” in organizing a fair for next summer. They’re considering a bigger event space to accommodate dozens more people who attended, compared to 30 the first year. They also may collaborate with other divisions to offer a bash for more families of children with chronic diseases.