Links

My advice to you is to use caution when searching for cancer information on the web.

You can find many web sites to help you better understand diagnosis and treatment. There are also several websites that will provide comfort and support to help you cope. But be careful… you may find yourself randomly searching for a cure for your child. It may become overwhelming and create unnecessary anxiety for you, not to mention information overload. You will find stories of other children with the same cancer as your child. Her prognosis may not be encouraging to you and the patient that you are reading about may have developed symptoms or has experienced a procedure that you may become concerned about. You may question why she is on a different protocol than your child. If you feel uncomfortable about what you have read, ask your Oncologist if this applies to your child. In most cases, your answer will probably be, “all cancers are different and every child is different. Each child responds to medicine differently and each cancer responds differently to particular chemotherapy drugs and experimental protocols.” I didn’t like to pay much attention to the statistics because research for a cure, technology and experimental drugs are on the rise all the time.

It is always nice to drop an encouraging word to other cancer patients and to check in and see how the patient and family are doing. In fact, I met quite a few families while Joseph was in treatment in Boston, New York and Philadelphia and their web sites were a great way to keep in touch. Sometimes their web sites would lead me to other web sites and before you know it, I was caught up in unnecessary anxiety and worries. At that point, it was time to take a break from the computer.

Here are some helpful hints when searching for information…
Try to search for specific information. Example: Make sure you know what you are looking for before you sit at the keyboard.

Only read what you think you can handle.
Make sure the information you are receiving is credible and up-to-date.
Some sites are created by individuals with the desire to help by sharing their story while others may use their site as a way to vent through writing their journals.
Look for reputable organizations with facts and cancer information such as: American Cancer Society, etc.

Helpful Links…

Keeping in touch
www.caringbridge.org
This site allowed me to keep family and friends up-to-date on how things are going. There is a journal section, a photo album, and a guest book for anyone to leave an encouraging note or message. It is very user friendly and is easily accessed from any web browser. Our site is www.caringbridge.org/ma/joeym.

www.carepages.com is another user friendly site for patient updates, photo album and guest book. This is a great way to keep in touch.

Cancer sites
www.cancer.org – American Cancer Society

www.cancerindex.org/ccw is a web site devoted to childhood cancers. There are several links to specific cancer types, research, and directory.

www.cancercare.org is a non profit organization whose mission is to provide free professional help to anyone who has been affected by cancer.

www.candlelighters.org This organization provides support, advocacy, information and funding. They are dedicated to the needs of families dealing with childhood cancer.

Drug information
www.drugs.com allows you to do a search on chemotherapy drugs or prescription drugs.

Just for fun links

www.orientaltrading.com (click on crafts and activities)

www.verybestkids.com is an excellent site for parents and patient. There are several ideas on what to do on a rainy day (in your case the translation would be, “what to do in the hospital”). This site also has some excellent craft ideas.

www.crayola.com allows you to print out pages to color, games, puzzles, etc.

Cooking

Here are some sites that may help you get creative with food. We all want our patient to eat and be well. Try some creativity with these food links.

www.kraftfoods.com

www.foodnetwork.com

www.lifecereal.com

www.bettycrocker.com

www.hersheys.com

www.childfun.com

For teens

www.cancerkids.org

www.cancerkids.com

Siblings
www.supersibs.org

Grief
www.compationatefriends.com

Check out Joey’s honorable gifts List for other organizations that gave us support throughout our treatment.