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December 31, 2019

Brain Tumor Resources

National Brain Tumor Society https://braintumor.org includes information on all types of brain tumors, and includes a clinical trial finder where you can research current clinical trials at https://trials.braintumor.org 

American Brain Tumor Association https://abta.org includes a number of educational resources and information.

Childhood Cancer Organizations and Resources for Teens & Kids

Sometimes it is hard to be a teenager. It is even harder when you have cancer.

The good news is that there are lots of resources available to help.

Some days you may feel like there is no one else who understands what you are going through.  There are. Many other kids with cancer have the same feelings you do. It may help to check some of these sites to see what others have to say:

Alex's Lemonade Stand www.alexslemonade.org - includes lots of resources and information, a treatment journal, Super Sibs program to help siblings and a Travel for Care program to assist with the costs of travel to treatment!

My Music Rx   www.mymusicrx.org

MyMusicRx.org is the online extension of the Children’s Cancer Association’s original in-hospital program. On any given day, 24/7, MyMusicRx enables ill kids and teens – anywhere in the U.S. and Canada – to play and download free music games, explore digital instruments, record original music, watch exclusive video greetings from their favorite artists, and connect with other youth.

CanTeen   www.canteen.org.au

CanTeen is a national support organization for young people (ages 12-24) living with cancer in Australia. Canteen offers educational programs, support programs and more.

2bMe        http://lookgoodfeelbetter.org/2bMe/2bMe.html

A site for non medical stuff – from skin and hair to fitness and friends.

Cancer.Net   www.cancer.net/coping/age-specific-information/cancer-teens/resources-teens

This site has an extensive list of resources for teens. Cancer.net is information from the American Society of Clinical Oncology 

Pediatric Brain Tumor Foundation http://www.curethekids.org/family-resources 

Informational videos, family toolkit for newly diagnosed families and even financial assistance for college.

Pediatric Brain Tumor Foundation's Imaginary Friend Society Videos

https://www.imaginaryfriendsociety.com

New words like radiation, hair loss, blood transfusions, chemotherapy, and surgery. Just to name a few. That’s where the Imaginary Friend Society comes in. A cast of characters inspired by the imaginations of kids themselves. Through a series of 20 animated short films, imaginary friends explain a wide range of complicated cancer topics in a way that kids can understand. Because the more they understand about their treatment, the less scary it will be.

American Childhood Cancer Organization https://www.acco.org  originally known as the Candlelights is the oldest and largest grassroots childhood cancer organization in the US. Lots of resources available on their website.

The Truth 365 https://www.thetruth365.org is an organization which unites many childhood cancer organizations in their efforts to advocate and educate. They are very active on social media and hold CureFest annually in Washington D.C.

Stupid Cancer   www.stupidcancer.org

A site for teens and young adults, ages 15 to 39. Today, Stupid Cancer is the largest support organization in the United States for the young adult cancer movement, with a global following and hundreds of thousands of friends, fans, readers, listeners and members. The Stupid Cancer Show is a weekly live show which can be listened to on iHeart Radio, downloaded from iTunes. Previous shows are also recorded on the web page.

Free Stuff for Teens & Kids

https://www.thecurestartsnow.org/impact/monkey-in-my-chair A free program for school age kids where they receive a life size stuffed monkey to sit in their chair at school when they are not able to attend. The program works with hospitals and schools to provide educational resources also.

www.goodwishesscarves.org - free scarves

www.campsunshine.org - A camp in Maine which holds free weeklong summer

programs and weekend programs for families.

 

www.cancer.net/coping/age-specific-information/cancer-children/camps-and-retreats-families-and-children-touched-cancer  - Cancer.Net is information from the American Society of Clinical Oncology – this page lists numerous camps

www.flashesofhope.org - provides free professional photo shoots for kids with cancer and their families.

Cancer and Your Friends

This section has been reposted with permission from Cancer.Net

Cancer can affect your friendships. Some relationships may grow stronger, and others may fade. It often helps to understand how your friends feel and learn to tell them how you feel. This section has information to help you understand:

           What your friends may be thinking

           How to talk with your friends

           Ways your friends can help

           How to accept changes

 

What your friends may be thinking

Your friends may have never had a friend with cancer, and some may not know how to react. Your friends may be thinking:

If they are avoiding you, they may not know what to say or worry about saying the wrong thing.

If they avoid mentioning your cancer, they may be afraid of upsetting you.

If they aren't calling you, it may be because they think you won't feel like talking.

If they aren't inviting you to be a part of activities, they may think you won't be able to go or they may feel guilty about having fun when you're sick.

If they aren't visiting you, they may think you don't want visitors or worry about any potential awkward moments during the visit.

Don't be afraid to take the lead and call your friends or invite them over. Plan activities that you feel comfortable doing, and your friends will probably have a better understanding of what you are able to do with them.

Talking with your friends

Because your friends probably don't know much about cancer, you can begin by explaining your cancer and treatment. First, decide what you want your friends to know. You may want to tell your good friends a lot, but just tell your casual friends or people at school something simple like, "I have cancer, but I'm getting treatment and will be OK." Your friends might not bring up your cancer, so discuss it when you feel ready. The more open you are with your friends, the more opportunities they have to be supportive and accepting.

If you're nervous about talking with your friends, decide ahead of time what you want to say. Remember that you are in charge of what you tell people, so you don't have to tell anyone until you're ready, and you don't have to say more than you want. Answer your friends' questions with as much information as you are comfortable giving.

Ways your friends can help

Your friends may want to help you, but some may not know how. Be honest about what you need and what they can do to help.

           Ask them to keep calling you, even if you don't always feel like talking.

           Ask them to keep inviting you to things. Even if you can't always go, you'll go when you can.

           If you can't go out, ask some friends over to watch a movie or just hang out together.

           Ask friends to visit you in the hospital, give them a heads up on what to expect, especially if you look a little different.

           If you can't see your friends, ask them to keep in touch online or through texting, instant messaging, phone, or e-mail.

           Tell your friends that sometimes all you need is for them to listen.

           Remind them that even though you may look different on the outside, you're still the same on the inside.

            

Accepting changes

Your friendships are likely to change, but many changes will be positive. You may be closer to some of your friends and find it easier to talk about important things. You may also find that the experience of cancer changes you somewhat, you may become more serious about school or want to help other people. You may make new friends whose interests are more like yours. You may also make friends with other teens with cancer who are more likely to understand your experiences.

Despite your best efforts, some friendships could fade. You may lose some friends but strengthen relationships with others or make new friends.

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