Beyond Diagnosis

Survival rates for some childhood brain tumors have increased in the past 30 years, but survivors often suffer from serious late effects.

Presentations by experts from our Informed Parent and Survivor series touch on matters beyond the medical information associated with diagnosis. These materials will help families learn about such topics as how siblings cope and what palliative care is all about.

How Siblings Cope

When a child is diagnosed with a brain tumor, the whole family is affected. That includes brothers and sisters, the so-called “invisible patients.” In this presentation, Nancy Barbach, a licensed clinical social worker, talks to three young people about how their siblings’ diagnosis altered their family dynamics and about how their childhood experiences are shaping their lives as young women. Get expert advice on sibling issues. >>

Redefining Palliative Care

Dr. Joanne Hilden, former medical director of Cleveland Clinic Children’s Hospital and co-author of the book “Shelter from the Storm,” explains why the redefinition of palliative care means it is no longer the last option for children who have not responded favorably to therapies. Learn more about palliative care. >>