Following are links to web-sites I found most helpful in our journey. Please note that I am not
a doctor or a health professional, and the information I am providing is based on my
own personal opinions and impressions. |
- Clinical Trials and Noteworthy
Treatments for Brain Tumors -
- This site, maintained by the
Musella Foundation For Brain Tumor Research and Information, is the most comprehensive site
for information about the treatment of brain tumors. It offers a searchable database
of clinical trials, which in my opinion, has more trials listed on it than the official PDQ
web-based database. If you are a brain tumor patient or a parent, this should be your starting
point on the web.
- The BRAINTMR listserv and the
Brainstem Glioma listserve -
- the most current imformation about
new developments in medicine can be found on listservs. As the medical establishment takes
months to publish results and will not
release any information on clinical trials while they are in progress, you can find out what is
going on in real-time on the listservs. Please take into account that the information
on listservs is anecdotal, and may be midleading. In my opinion listsers
are the best place to get practical tips for living with a disease, its symptoms
and side-effects of the treatment. For some, listservs may also be a source for
emotional support. Access to 69 listservs on cancer and related disorders is provided
through ACOR -
Association of Cancer Online Resources, Inc..DaybyDay is a listserv for parents who lost
children to cancer. Please e-mail me privately for details.
- Talking with your
child about cancer
- This excellent booklete published by the National Cancer Institute, explains what and
how to tell children when diagnosed with cancer. Practical, age-appropriate
guidelines are provided. This booklete is a "must read" to anyone who talks to
children about cancer: parents, doctors, nurses and teachers. The
National Cancer Institute
site provides access to other
publications for cancer patients and their families.
- Pediatric Oncology Resource Center hosted on ACOR
- A comprehesive site create by parents of children with cancer. It includes original
articles, guidance and direction to other resources on specific diseases, treatments, family and support
issues. Good insturctions on how to search for medical literature on the web,
and how to evaluate internet resources are given.
The is the home of the Childhood Cancer web-ring.
This Battle Which I Must Fight
- The full text of a book published by Health Canada gives an overview of
the concepts central to the treatment and emotional impact of
cancer in early life. Considerable attention is given to the
psychosocial aspects of cancer in the young.
Writings of children with cancer and their families provide a window
to the inner world of people affected by this disease. A broad
description of the types of childhood cancer and treatments is provided, as
well as contact information to main cancer organizations and medical
centers. This book is well organized, has references, and statistical
information on survival and incidence. A comprehensive
list of printed and audiovisual materials relating to
cancer in children and teenagers is very helpful.
- A collection of brain tumors links
- Links to sites on adult and childhood
brain tumors, doctors and hospitals that specialize in neuro-oncology, alternative treatments
and support information. Maintained by Jim Kenzig as a tribute to his daughter Kristen
who died from a brainstem glioma.
- Brain tumor organizations:
- Always in our hearts A list of children who died from a diffused brainstem glioma.
Synopsis of a life cut short
created by Ruti Volk
last updated 6-29-99