Shelly's Place
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Shelly's Life and Family
The Funeral
Dear Friends
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.

New! 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
Shelly's Place

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created by Ruti Volk
last updated 6-29-99