If you have a childhood cancer to add please e-mail us and we will be glad to add it.
Please be aware that not all information on the web is reliable and your Doctor may advise against personal research. The websites below seem to be concise and imformational but we are not responsible for the quality of information.
If you need me to add a type of cancer contact Lu @ [email protected]
Ependymoma
SYSTEM
Ewing's Sarcoma
Burkitt's/Non Burkitt's
Lymphoma
AML, ALL,CML
Did someone say something that confused you? You are not alone.....
You must learn "cancer-ese", a whole new language. Don't worry, you'll catch on!!
If you are looking for a crash course, try downloading this glossary of terms. You don't need to learn it all. Just keep it for reference.
Try Gilda's club. They have a wonderfully cozy facility and many support groups for survivors, siblings and parents. They also have a number of fun activities for both children and adults.
*You can either set up a chain of callers, so that you need only make one phone call and let friends take care of the rest OR
*You can set up a free website, they are easy to update and that way you can keep everyone updated at the same time recieve words of support in the guest book.
You can use Caringbridge (the website most people choose, for it's ease & large network)
Otherwise Yahoo Geocities is another simple free option.
It is important to keep your own accurate records of your child's medication, blood counts and food intake. This information can be invaluable when talking to doctors on the phone, and for spotting trends in behavior/ reaction to medications.
(complete blood counts)
It is available from wwwOreilly.com there is also a
Lukemia specific book "Childhood Lukemia 3rd edition."
Your first line of defense is always the hospital social workers, do not be embarrassed to ask. The social workers specialize in helping families during this difficult time. They should know of many avenues to persue funds to assist you. Another option is to visit various websites in your quest for seeking other funds. Many have grants which you can apply for. Be advised, each one requires paperwork from your oncologist or social worker. Try applying for disability for your child through your local social security office. Don't be deterred by long waits and surly employees!
