Thursday, January 31, 2008

Teens and Cancer - The Challange

One of the things that has been such a blessing through this experience is the way Tyler's peers have come to his support. I have heard from many teens with cancer, and they often write me that many of their friends just "faded away" when they learned of the cancer. They often feel very isolated and alone. That has not been our experience. Tyler has spent many days alone, but that is just the reality of things like Tyler's blood counts and friend's school schedules. When they can get together they do. And it is always a huge lift to Tyler's spirits. And there are the text messages, cards, and blog comments that help so much as well.

Beyond that, it has been so exciting to see the events put together by the Dublin Hockey Association and the Jerome Basketball team. I love to see the number of people with Tyler's green "Fight to Win" wrist bands. This coming Saturday morning Jerome High School is having their annual "Snowball Softball Tournament" for Tyler. Tyler just received his "Fight to Win" tee shirt for that event. At 8:00 Saturday night is "Laps for Love" for Tyler at the Dublin Recreation Center, and many of his classmates will be there. Tyler's friend Julie designed a "Fight to Win" tee shirt that we hope to have ready by Saturday. The community support has been wonderful, especially from Tyler's peers. Tyler's brothers and I will be at both events.

The support from peers is so important. The more we go through this process, the more I realize the unique challenges young adults have in their battle with cancer. Teenagers represent less that 15% of patients in pediatric cancer hospitals (and only about 1% in adult hospitals). In many ways the systems are just not set up for these young adults and their unique issues. Just as these young adults are realizing the freedom and adventure of adulthood, they are thrown into a world of dependence and uncertainty. I have been thinking a lot about what I can do about this reality. As the father of 4 boys, one with a life threatening cancer, I feel I should be able to come up with a something that could help.

The hospitals do provide counselors and support groups to help the kids talk through their concerns and fears. I realize talking is important, but opening up to strangers is very tough for teenagers. I think that is especially true of boys. I know as a teenager all my friendships were developed around games of competition, adventure, and excitement. Actually that is still true for me as an adult. Football, baseball, paintball, and bottle rockets. White water rafting, skiing, Draino bombs, fireworks, and bonfires. The thrill of victory and agony of defeat. That is what our life is. Then life gets put on hold. Life becomes sitting in a room alone watching T.V. Even ESPN gets old after 18 hours a day. And then we ask them to sit in a circle of strangers and open up about their inner feelings. As my uncle Hank used to say, "I don't think that dog will hunt". It's not going to work.

So here is the challenge. What do I do about this? How do I help these kids that need activity, challenge, and adventure, but are often trapped in a room by themselves? They are in hospitals that block things like x-box live and facebook. Sometimes stuck in isolation for weeks at a time. Sometimes longer. What do I do?

I actually had a dream the other night that we gathered all the kids in the hospital and had a giant all day paintball battle inside the hospital. Hospital staff verses patients. It was a great dream. And I think it would be a blast.

I do realize there are some logistical problems with paintballing in the halls of the hospital. So I had another idea. Recently a family bought Wii's for all the bone marrow transplant rooms. I would like to expand that to the other rooms. Beyond that, I would like to connect them all, so the kids could compete with each other and communicate with each other. We could create a point system and rankings in the games. Even add prizes, sort of a Dave and Busters type of thing. Anything to keep these kids excited, challenged, and takes their mind off their situation. Something to look forward to, and a reason to wake up and move around.

It could be internet based if it could be expanded to include other floors and even other hospitals. Often these kids move from other hospitals because of needed specialties. Many pediatric oncology hospitals are so small that there may be only one teen there at any given time. It would also keep the kids connected during the times they are able to go home. This would allow them all to stay connected, building important relationships and sharing experiences over the months, and often years, that this battle takes from their lives.

These relationships could then help encourage them to attend the camps and social events that are so important, but that many of the teens shy away from because they do not know anyone.

I do not know psychology. Nor do I know technology or computers. But I do know fun. And I do know kids. Especially teenagers. It may be because I have so much fun with my fours sons (or because I never really grew up myself - Kathy tells everyone she is a single parent of five boys). But we have a lot of fun. I do not know if this makes sense to anyone else. But as my uncle Hank used to say, "I think this dog will hunt".

7 comments:

beth said...

Kyle,
We will have to chat sometime. What you are talking about is similar to some of the things that we have experienced with Alex...the limits are set by the society in which we live. For us the challenges are physical modifications that would need to be done. Not too much money and effort (as you saw when you guys played nerf gun with Alex) and everyone has fun together. I have thought about the isolation that cancer patients go through we cetainly can relate. We need to make "afflictions" more enjoyable...sounds strange but it can be done..alot is a matter of perspective...go to it!!! When we were in PICU and we smiled it was like we had committed a crime.
Matbe you could build a slide off the roof of Children's:)

Love ya guys!

Anonymous said...

http://sportsillustrated.cnn.com/2008/writers/the_bonus/01/28/andruzzi/index.html

Unrelated to the post, but I thought this link might be uplifting to you. It's an article about a former NFL player who is a Burkitt's survivor.

Anonymous said...

I noticed the link was cut off so I searched for it--it is:

http://sportsillustrated.cnn.com/2008/writers/the_bonus/01/28/andruzzi/index.html

~Cindy Duco

Anonymous said...

let me try one more time: )

http://sportsillustrated.cnn.com/2008/writers/
the_bonus/01/28/andruzzi/
index.html

Kyle said...

I just got the artical. It is very good. Thank you. I will be giving it to Tyler.

Mom said...

Kyle,

You are on to something. Uncle Hansel is right. This dog will hunt.

I do not understand the Internet but could a chat room type situation be set up exclusively for Teens with Cancer? No adults allowed in. The kids could meet each other, talk if they feel like it, listen to others, build relationships and develop comrades for life.

Within this closed and special society there could be games from Chess to Hero Action to Sports - Let the kids create the rules of play: There will be activities for the girls - activities for the boys and some for both. Who knows a little romance might even blossom.

A place to express or just listen. A place to hang out - a place to find a partner or partners for a game, some fun, an outlet, an escape from the room they are in, meds they are taking and the adults poking and prodding. Warriors in Common - Teens fighting strong to win.

This is not the paint balling in the hospital halls you were thinking of but I do think your idea of connecting these kids is absolutely right on.

Keep working on this idea.

Mom

deyerles said...

Kyle,

I was thinking something like magic quest. It is a game you play in the halls of The Great Wolf Lodge.
There are 9 different quest you have to conquer. You have a wand as you roam thru the halls looking for each clue. You could incorporate on the computer for the kids who aren't mobil. Girls and guys of all ages seem to love it! I send you the pamplet so you'll have a better idea.

Enjoy this special weekend!
Love
Debbie