Monday, February 28, 2011

Rain, rain go away! And, Rare Disease Day!

Today is a very rainy day! I don't like rain because my mom won't let me play outside when everything is wet. She won't even let me sit on the balcony to do my school work, even though it doesn't get wet under there! I'm supposed to be doing school work right now, but my mom is working in her office, so she can't see that I'm blogging instead. My brother and sister are arguing over what tv show to watch. I bet mom comes out to yell at them soon because they are supposed to be doing a science project. Elyssa and Elijah are twelve. They're also twins, but the only thing that's similar about them is that they have LFS too.

Usually, I really miss going to school with my friends, but not on rainy days like today. On rainy days at school, we either have to spend recess inside playing baby games like Heads Up, 7 Up or we have to stay on the black top because the playground gets all muddy. I feel good today, so maybe my mom will let me have a "recess" to play Just Dance on the Wii. Sometimes Elyssa plays with me. She's a really good dancer, so it's really fun when I beat her. What do you do for fun on a rainy day?

Ooh! Elyssa just took a picture of me blogging! Now I have to be really nice to her so she won't show mom!

Today is also Rare Disease Day. There are approximately 7,000 rare diseases that are known. Rare Disease Day promotes awareness and fundraising. There are lots of diseases out there, like mine, that very little is known about it. It makes it hard for doctors to treat and correctly diagnose rare diseases because so little is known about them. I'm lucky, though, because my disease is treatable. There are some diseases that have no treatment at all. If you or someone you know has a rare disease, my thoughts are with you today. My mom says we can have ice cream later to celebrate. 

Sunday, February 27, 2011


Hi! This is my very first post on my very first blog, so I thought I'd use this post to introduce myself. I'm ten years old, and I live in Cincinnati, OH. I have Li-Fraumeni Syndrome. LFS is a really rare genetic condition that results in lots of different types of cancer. My doctors say it's a "predisposition" syndrome because LFS doesn't actually *cause* cancer, it just makes it more likely that you *get* cancer. So far, I've only had two different cancers. I had acute lymphoblastic leukemia when I was four years old, but I went into remission at age seven and was in remission until just a few months ago. Now, I have Ewing's Sarcoma in my left leg, but I'm going to beat that too. I decided to make a blog so that everyone can see that my life isn't that different from a normal kid's. Anyway, enough about the cancer.

In my spare time, I enjoy hanging out with my friends, reading, cheerleading, and gymnastics. I love all kinds of animals and want to be a veterinarian someday. My mom says maybe I can get a puppy soon! What kind should I get?

Here are some pics of me:

Christmas 2010, two weeks before diagnosis

Chemo + me = bald

New wig, just before surgery

Today was a nice day, and I felt well enough to go out