Ross

My name is Ross and I have Burkitt's lymphoma. Since I've been sick I've figured out some ways to make life with cancer easier to swallow (see tip #10). I hope that these tips help you too!!

1. Have a nurse come to your school and explain cancer and chemotherapy to your class.

2. Go to 'rec' as often as possible. My favorite games are Nintendo, Skip-bo, Uno, Hero Quest and Sequence.

3. Bring your special blanket into the gallium scan, MRI and CAT scan.
It will keep you warm and help you to keep still. I fell asleep during my MRI.

4. Keep a sense of humor. When my hair grows I'm having "Why Me?" shaved into the back of my head! Also, thanks to Linda Jacobs for her great April Fool's joke on me.

5. Go to school! The teachers are really nice and help you keep up with your classes. Best of all is recess (playing Lemmings on the computer).

6. Don't trip on the concrete when you only have 19,000 platelets!

7. Read lots of books (or better yet have your parents read to you). I especially enjoy Roald Dahl. Matilda, Charlie and the Chocolate Factory and Charlie and the Glass Elevator are some suggestions.

8. If you're thirsty in the middle of the night, use some IV tubing as a straw in a glass of ice water so you don't have to sit up to drink. Attach the tubing to your pillowcase with a big paper clip. It works great.

9. Write a newsletter on the computer to explain how you got sick and what your treatment will be. Enclose it in your thank-you notes so your mom only needs to write a short thank-you for you to sign.

10. Learn how to swallow pills. First of all, use a Nerd Candy for practice. That way if you're unsuccessful you can still eat the candy. It helps to drink water from a bottle instead of a cup as it seems to make the pill go down easier. Taking pills this way makes life with cancer easier to swallow!

11. Keep a diary of the ups and downs. It's also a good way to record drugs used, reactions and blood counts.

12. Use baby oil to get EEG glue out of your hair or off your scalp.

13. Never ride in the car without your urinal and a bucket.

14. Bring heparin and a blue cap whenever you go in for a blood draw or transfusion at your doctor's office or another hospital. They don't always have them.

15. Use relaxation for your spinals. Think about breathing in and out, it helps keep you still and keeps your mind off the poke. It also helps to stare into your mom's face.

16. If your hospital has Nintendo or Sega, bring your games from home (with your name on them). A Game Genie makes it really fun to play with your friends (and it's not cheating, Jason!!).

17. Go back to school for at least a few hours whenever you're home. It's really fun to see your friends and helps them to understand how you're feeling.

18. Be your own activity barometer. Nobody knows what you're up to doing better than you do, and whenever you do feel good, have fun!

19. After swimming, swab baby oil on your Hickman Tegaderm and let it soak for about half an hour. It makes the Tegaderm come off much easier.

20. Let your mom and dad go for walks. They come back less hyper.

21. Eat bananas. Liquid potassium tastes terrible!

22. Rinse, gargle and spit after all liquid medicines. I like to make funny noises too.

23. Get at least a 2-hour video when you're getting VP-16. They take your blood pressure every 15 minutes so you're stuck in bed.

24. Tell your mom's age to everyone on her birthday. It's fun! (My mom is 36.)

25. Get your hair cut short before it starts falling out. Otherwise it goes up your nose and in your mouth. I slept through my hair-cut!

26. Don't be afraid to get your Hickman out. They give you Midazolam and it makes you forget all about it.

27. Take your eye drops on schedule when you get Ara-C.

28. If you have trouble doing a medicine (like Fluconazole with chocolate pudding), pick a mantra (a word which represents a happy memory) and say it over and over to yourself until you're calmed down. Then do the medicine. My mantra was 'bullfight'.

29. It's okay to be sad. It's okay to be mad. It's okay to cry. It's okay to laugh.

30. THANK GOD FOR WHITE BLOOD CELLS!!!

Burkitt's Lymphoma
Diagnosed at 6
Written at 7

Ross is now 12 years old. He led a fund-raising effort in 1997 that raised nearly $8,000 for the American Cancer Society. It was the biggest team in the history of the Sole Burner with 318 participants. His reason: "So more kids, like me, can BEAT their cancer."

Reprinted with permission from the book "Kids with Courage."
"Kids with Courage" may be obtained by calling Wisconsin Clearinghouse at 800-322-1468.

No part of "Kids with Courage" may be reproduced in any way or by any means without permission in writing form from:
University of Wisconsin Comprehensive Cancer Center
K4/666 Clinical Science Center
600 Highland Avenue
Madison, WI 53792