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By Stacia Wagner
Thursday, May 3, 2012

Last week we had a teen and young adult get together at Children’s Hospital of Philadelphia (CHOP). The group discussed advice they would give to a newly diagnosed teen and advice they would give to friends of a brain tumor patient or survivor.

One young man came up with an ingenious way of dealing with friends who would come to visit him. If he didn’t feel good or just didn’t want them around, he didn’t want to be rude and make them leave. He lived quite a distance from the hospital and knew it was difficult for them to get there. He wanted to make sure he had a way of getting them out of the room. So he developed a code word which he could say to his mother. She could be the “bad guy” and make everyone leave. His code word was “clam chowder.” After further discussion, the group decided in the future they would also have a code word which they would share with the medical team to indicate they needed a break from their parents. They said it was easy to tell when their parents needed a break and were stressed. Or when their parents were just getting on their nerves and they needed a break, but did not want to be rude. Genius!

The group agreed that their friends fell away while they were sick and did not always return after. They said most people just avoided talking to them. There was a general consensus that teens and young adults have no understanding of brain tumors and that for many, it was a very isolating experience. Here are some of the tips they developed to give to friends of a brain tumor patient/survivor. Really the tips are no different than advice you would give anyone in developing a friendship. But they could not emphasize enough the importance of being sincere!

  • Think about what your friend can or cannot do and make plans which will allow him/her to participate.
  • Give them a chance. Ask before you assume he/she will not want to do something.
  • Take time to understand.
  • Small things mean a lot-Visiting someone and bringing something small like a Slurpee feels great.
  • Be sincere-don’t fake it. Your friend will know if you are just making a sympathy visit to the “brain tumor” kid.

And here is the advice they have for a newly diagnosed teen.

  • Dealing with body image changes is hard. Going from indentifying as an athlete, for example, to not knowing where you fit in is difficult. There will be times you will be sad and miss your “before” life. It is ok to miss this.
  • Remember you didn’t do this to yourself
  • Find happiness in the things you can do, try not to cry about the things you can no longer do.
  • Dig deep, reach out and do it!
  • Take happiness in the little things
  • Look for things you may have in common with others. Try new hobbies.
  • You never know how things are going to turn out, but you are going to come out a stronger person.
  • Everyone wants to be normal. Accepting the new “normal” is hard.
  • Understand your limitations
  • Give your friends a chance. They may not know how to reach out and you may have to take the initiative.
  • Remember you were in the middle of living life when this happened. It is going to take time.

Feel free to add your comments. Thanks to the great group at CHOP for sharing their wisdom.

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