Personal Contacts with Parents and Kids, Mailing Lists, and LISTSERVs
Meeting real people online often provide a more emotional view of the pediatric neuro-oncology experience. Many children, teens and parents have their own personal websites. Their stories are touching, painful, funny, and occasionally, heartbreaking. They tell us what it is really like to live with the disease.
Online mailing lists offer e-mail contacts and chat rooms where you can share personal experiences. You can also post messages or questions on bulletin boards and collect helpful answers. Discussion groups can function as support groups, which might be difficult to find or attend in person. You can also always reach out past the Internet connection by phone and talk with a live person in a similar situation. There seems to be a universal connection by heart when a child is ill.
Links available on the following pages are not necessarily endorsed, reviewed, or sponsored by Nicklaus Children's Hospital, formerly Miami Children's Hospital. By clicking on any of the links, you will be leaving NCH's Website.
Professionals volunteer to answer questions by email at allexperts.com/ neurology
Professionals volunteer to answer questions by email at allexperts.com/ brain tumors
Children with cancer tell their stories via web pages at Cancer Kids. Links to free web-hosting service.
A cancer-battling cartoon superhero was developed by Ben de Garis to help explain his disease and its treatment to his younger brother and sister. Players are briefed and quizzed about cancer and its treatments while piloting "Chemo Crafts" through the human body, battling evil cancer cells.
The Hospital School for Sick Children in Italy provides educational activities on the onco-hematology ward of this hospital. (In English and Italian.)
Access resources for children with special needs and disabilities at Our-Kids.