Monday, July 18, 2011

Thanks! Plus, suggestions please?

Thanks, everyone, for the birthday wishes! I feel so loved!

Not much has been going on around here in the birthday aftermath. Eli is still in the hospital, but he is recovering. Elyssa is gone to dance camp. She says she's having tons of fun. I went for a check up yesterday, and everything looks fine. Mom says I should be able to go to school this fall! I want to join a team or something, but I don't know what to pick. I haven't asked my mom yet, but I think she'll say no to swimming because of the germs in the water. *eye roll* I really like to dance, but that's Elyssa's thing, so I'd rather not join the dance team. I'm pretty good at gymnastics, but my school doesn't have a gymnastics team. I used to take gymnastics lessons, but I don't think I'm good enough for the competition teams here yet. They are really good. Maybe I could try cheer leading? Anyone have some suggestions? I want to be active again!

Friday, July 8, 2011

Birthday Pictures!

My birthday was on Sunday, but last night I got to have my party with my friends! It was so much fun! Eli isn't coming home from the hospital for awhile, so my grandparents are still with us. Since they are helping, Mom let me have a slumber party! I'd never had a slumber party before. I invited Sarah (my bestie), Mia, and Sonali from my class plus Sonali's best friend, Chrissa from one of the other classes. Sarah didn't get to come though because her family was leaving for vacation. I missed her, but it was a great party! We put on our pajamas first thing and then had dinner. Here are some pictures. The first ones were on my actual birthday.

Me in the dress my grandparents bought me

Me with Elyssa

Hanging out in my room

Yummy food!

Me, next to my birthday food

Eating with my friends

Cake! My grandma made it from scratch!

Hanging out before bed

Elyssa took this one of all of us sleeping

What a great day! I hope I get to have another slumber party really soon! 

Monday, July 4, 2011

Happy Birthday, America!

America is 235 years old today! We celebrated America's birthday over the weekend, and it's a good thing too because it's storming today. It's supposed to rain all day! Normally, I don't like rain, but I'm a little tired from all the excitement that's been going on here. It will be nice to stay inside and play with my new stuff that I got for my birthday. In case you were wondering, I did get my new doll! I got Addy! I collect the historical American Girl dolls! I also got a couple new books and movies and some new clothes. Elyssa and I are going to watch one of the new movies right now. It's Harry Potter and the Deathly Hallows Part 1! I've seen it before, but I love watching all the Harry Potter movies over and over again. I can't wait to see the new one in the theater! Elyssa gets to go to the midnight showing in 3D, but mom says I'm not old enough yet. She's taking me to the very first showing the next day though! How is everyone else spending their Independence Day?

Sunday, July 3, 2011

It's my birthday!

I am 11 years old! My grandparents are staying with me and my sister because Eli is still in the hospital. This morning, my grandma and Elyssa surprised me with breakfast in bed. Grandma made heart shaped waffles, and Elyssa made me a strawberry smoothie! It was delicious! This afternoon, grandpa took me for a ride in his really old classic car. He doesn't drive it very often because it's an antique and would be really hard to fix if something happened to it. It was so much fun! For lunch, we (my grandparents, Elyssa, and me) went to this fancy French bistro. I had quiche! It was wonderful! We've been in the pool since we got home from lunch, and grandpa is grilling steaks and corn on the cob for dinner. Mom and dad are going to come home from the hospital to have dinner with us. For dessert, we're going to have red velvet cake! It's my favorite kind of cake! After dinner, grandma says I can open my presents. She's keeping them hidden, so I have no idea what she got me. I know what Elyssa and Eli got me though because Eli is a terrible secret keeper. They got me some new books! I hope my mom got me a new doll, but I haven't seen any big brown boxes lately, so she might not have gotten it. I'll try to post some pictures soon! My grandma doesn't have a digital camera, just the kind with film, so all the pictures she took have to be developed and scanned.

As for Eli, his fever is down thanks to some vancomycin, but he's still going to be in the hospital for a few days. His blood counts are really low. He might have to have a transfusion. I hope he gets better soon!

Saturday, July 2, 2011

Bad birthday news!

I am so sad! My birthday is tomorrow, but I don't get to have a party after all. Eli started running a really high fever in the middle of the night, and he had to go back into the hospital. He has an infection, but the doctor doesn't know what kind yet. They are doing a spinal tap on him tonight, maybe even right now. Elyssa and I are staying with my grandparents, while mom and dad are at the hospital with Eli. We are all really worried about him, but I can't help feeling sad that I won't get to have a birthday party. Last year I couldn't because of Elyssa, and now I can't this year because of Eli. It's not their fault, I know. But, I'm still disappointed. And, they understand because I've ruined their birthdays a few times too. It's all just part of having LFS. My mom says we can try to have my birthday later, when Eli is better. I hope he is better soon! For selfish reasons and because I don't want him to be sick. It's no fun being stuck in the hospital and feeling awful.

Sunday, June 26, 2011

My birthday is really soon!

Guess what! My birthday is exactly one week from today, on July 3rd! My mom says I can do anything I want, as long as it's legal and within 20 miles from our house, but I don't know what to do. I will be turning 11! I am so excited! As of right now, my siblings and I are pretty healthy. I got chemo on Friday, and I still feel pretty good, just a little tired. My doctor said we can wait to do my next dose on July 5th so that I will feel good for my birthday. Eli is also doing much, much better. All that means I could do something outside the house, for once! Last year, Elyssa was really sick, so we couldn't have a party. Only my grandparents came to visit, but my mom made up for it by letting me have extra cake. We're having a cook out/pool party for the 4th of July, but my mom says we can do a little something extra for my friends since the cook out is going to be just family. Maybe a picnic in the park? I don't know!

Thursday, June 16, 2011

Hanging out with Lanie

Hi, everyone! My mom's friend came to visit, and she brought a girl named Lanie with her! Lanie is the same age as me! We had so much fun! First, we went to Build-A-Bear Workshop! Lanie had never been to one before, so she helped me make a new friend. Then, we went to the toy store. Our mom really like Monster High, so we had to look at them. Then we had frozen yogurt! It was so yummy! I ate too much.

Here we are with my new friend Pink Hello Kitty:

Kitty is very silly:

Hey, Mom, I need this chair!

Making Kitty a birth certificate

Riding in the basket at the toy store

Mom got a new Ghoulia! We're sitting on her!

Waiting for some frozen yogurt!

I had so much trouble picking toppings!

Eating with Lanie

Was it ever yummy!

I hope I can visit with Lanie again soon! It was so much fun visiting with her while the grown-ups talked!

Friday, June 10, 2011

We have visitors!

One of my mom's friends, who lives very far away, is visiting us this weekend! She has kids my age too! We're going to do lots of fun things: go out to eat, go to the park, go shopping! We are so so excited! :D I'll update soon with pictures!

Friday, June 3, 2011

The Henley house has been busy!

Hi, everyone! Sorry I haven't written in a while. We have been so busy! Eli finally got to come home from the hospital, but he still needs lots of help. He can't be out of bed very much, so everyone has to help him do things. I don't mind though because I am so glad that he's home. Elyssa is glad he's home too. She helps him with his homework every night when she gets home from dance practice. She's been feeling great and is dancing better than ever. I've been feeling pretty good lately too. So good that mom let me go back to school for the last two weeks! It was so much fun to see my friends and my teacher again! I was even glad to listen to the history lesson! My teacher is way more interesting than the textbook I had to read from at home. My favorite subject is science though. Mom lets me do some experiments at home, but the ones at school are so much better! Today was our last day though. I'm going to miss my friends!

Here I am on the last day:

With my friends Mia and Sonali:

Mia and Sonali:


Us again:

How about you guys? How is everyone doing? I hope everyone finished up their school year well!

Edit: We also have a surprise coming in two weeks! I can't wait to share it with you! :)

Saturday, April 30, 2011

Eli is awake!

He woke up this morning! I am still not allowed to go see him, but mom said he asked for me and Elyssa. We might get to go see him later this week, once he is no longer in ICU. The doctors think he will be just fine in a few weeks! Very happy news for us! As for me, I'm still feeling tired, but I didn't get nearly as sick after my chemo this time! I even got to go outside for a little while today to read. It was really nice! Just a short update for now. I'm trying to get caught up on school work again.

Sunday, April 24, 2011

Wig Comparison!

Hi, everyone! After what seems like forever, I am finally posting pictures comparing my wigs! It's been a rather eventful month at the Henley house. I am recovered from my double ear infection, but I didn't react well to my last dose of chemo. I've been very tired and spending lots of time sleeping. Eli had his surgery. It went well initially, but his brain swelled a lot after, and he's been in a medically induced coma to give his brain time to heal. They're supposed to try to wake him up later this week though. Elyssa is doing well in school. She's even back on the dance team! Now, for the wig comparisons!

Dark Auburn



Sorry they aren't the best quality. I'm still not feeling my best, but I had Elyssa take them for me anyway. Comment and tell me which one is your favorite and why!

Monday, April 4, 2011

Quick hello

Hi, everyone!

Sorry it's been so long and that I still haven't posted any wig pics! My family has been pretty sick lately. Elyssa caught a cold at school, so of course, the rest of us caught the cold too. Mom, Dad, and Elyssa are better, but me and Eli have ear infections now. Eli's is only the left ear, but I have a double ear infection. They are no fun! :( I will try to post a comparison of all my wigs really soon. Thank you all for your nice comments! :) I love reading them! As soon as we are all better, Eli is scheduled for surgery. It was supposed to be tomorrow, but the doctors want to wait until we are all well. I'm really nervous for him. They're going to cut open his brain! I have had surgeries on my leg, but it would be really scary to have surgery on my brain. He's not worried though. Eli is so brave! I just love him! He says he wants them to give him a mohawk when they shave his head for the surgery. Mom would probably have a cow, but the doc seemed into it. The neurosurgeon is really cool. He has red tips on his spiky hair!

Tuesday, March 29, 2011

Another new wig!

My newest wig came in the mail yesterday! It's straight and really dark brown/black. As soon as my sister gets home from school, I'll have her take some pictures!

By the way, today is my sister's first day back to school since she went into remission last July. Mom didn't want her to go back to school yet, but Elyssa really wanted to. She misses all her friends there. I miss my friends too. I hope I get to go back to school in August. I know I won't be able to go back before summer.

Tuesday, March 22, 2011

A surprise, a new wig, and pics galore!

Here are some pics Eli took of me and Elyssa playing outside. What do you think of my blonde wig? I think I like the red better! Mom says I can get a brown or black one to try out too. I'm having fun trying different wigs. Eli started calling me a chameleon.

Me and Elyssa with our new Playmobil set

Me and Elyssa on the driveway



And, now, for the surprise I mentioned a couple days ago! Our puppy is here! We haven't picked out a name yet, but here are a few pictures!

Hope you enjoyed the pictures! I'm adding more pictures! Our friend Iliana came over to visit today!

Playing Dominoes

Playing Barrel of Monkeys


Elyssa, Me, Iliana

Monday, March 21, 2011

Usually, I don't like homework, but...

Today, mom let me do my homework on the balcony! Homework isn't so bad when you can do it outside with Girl Scout cookies and a frappuccino from Starbuck's! I'm so excited that it's spring and to see warm weather! Over the weekend, Eli took some pictures of me and Elyssa outside. We got a new Playmobil set and took it outside to play in the sun. I'll ask Eli to upload them when he gets home. He's at the doctor right now. They're scheduling his brain surgery today. I'd be scared, but Eli isn't. He says he'll be glad to get rid of the headaches and the dizziness.

Mom says we're having a family meeting when dad gets home from work. I'm a little worried. Usually, family meetings mean one of us is in trouble, either because we caused it or because of our LFS. Elyssa is being really nice and trying to distract me. We are going outside to play right now. I still have to rest a lot and take it easy, but we have a big swing in the yard. It's big enough for all three of us kids and mom and dad! Elyssa said she'll do all the swinging, so I can just relax. I'm probably going to start re-reading Rodrick Rules before I go see the movie. Elyssa's into a different book series right now, but mom says she's not supposed to be reading it. It's about vampires. She sneaks and reads them. She borrows them from her friend, who's 13. Mom says they're for high school kids and older though. Maybe that's why we're having the meeting. I bet mom found those books under Elyssa's mattress.

Saturday, March 19, 2011

There's no place like home!

I am so glad to be home! Last night, the doctor said I could go home, but I didn't want to say anything just in case things changed. But, I can shout it from the roof top now! I am finally home! It feels so good to be settled into my own bed! Everyone is being nice and helpful because they're happy I'm home, but I know that won't last long. :P After mom helped me settle into bed, Elyssa brought me a snack, and Eli brought me a surprise. Tickets for me and him to go see the new Wimpy Kid movie when it comes out next week! It's the second movie based on the second book, Rodrick Rules, and it comes out March 25th! I can't wait to go see it! :D

There might be another surprise later today! Mom says I have to take a nap now, but I'll be back to share the surprise with everyone!

Thursday, March 17, 2011

Happy Saint Patrick's Day!

Hi, everyone! I'm feeling much, much better today! Still coughing a bit, but no fever! I'm still in the hospital, but the doctor says I might get to go home on Saturday. I'm kind of glad I'm still at the hospital today, though, because my entire breakfast was green in honor of St. Paddy's Day! I had green oatmeal, green scrambled eggs, and green juice. It tasted like apple juice, but it was lime green! It was the most fun breakfast I've had in awhile. I'm really glad they didn't serve green Jello. I hate green Jello! I wonder if my lunch will be green too...

I got to talk to Eli and Elyssa this morning. Elyssa baked green, shamrock shaped cookies for St. Paddy's Day. Mom is going to bring one in to me when she visits this afternoon, if Eli doesn't eat them all first. Eli said he helped, but Elyssa said he just kept eating the dough before she could cut it with the cookie cutter.

Oh! I almost forgot the good news! I got my cast off yesterday! I have to go to physical therapy now to try to build up some strength in my leg before surgery. My first day is supposed to be today, but it will be a short session because I still get tired very easy.

Luck o' the Irish be with you all!

Saturday, March 12, 2011

Tay asked me to update

Hey, everyone, Elyssa here. Tay asked me to give her friends an update. She started running a fever again on Saturday. She has pneumonia from an infection that her body couldn't fight. I haven't been able to see her since Saturday morning, but mom says she's getting better. I talked to her on the phone, and she sounded weak, but she was her usual sunny self. Tay makes fun of Eli for milking the situation, but I think she does a good job of it too. (Who am I kidding, we are all good at it!) She asked me to bake her oatmeal raisin cookies! And, I probably will because I hate seeing my baby sister sick, even though I know she'll go right back to bugging me as soon as she's well.

Love you, Tay! I can't wait until you're back home!

Friday, March 11, 2011

Earthquake and Tsunami

My heart goes out to all those affected by the disaster in Japan. I was so sad to see it on the news when I woke up this morning. I hope the people of Japan and other affected areas can heal from this quickly. I don't know anyone who lives in Japan, but Eli and Elyssa do. They have a friend who is from Tokyo but lives here in the States. She emailed Elyssa and said that all of her family members in Japan are safe, but that they did feel the quake. Elyssa's friend said it was really scary for her cousins who live just south of Tokyo.

Thursday, March 10, 2011

Sweet and Sour

This is my new nickname for my sister. Sometimes she can be really, really sweet. And other times, REALLY sour. Mom says it's because she's becoming a teenager. Elyssa and Elijah will be 13 on April 10th. I don't think I'll act as crazy as she does when I become a teenager though. Last night, she spent an hour and a half in the bathroom washing and fixing her hair. There wasn't any hot water left for me! I asked her why she wanted to fix her hair before going to sleep, and she said it was just in case she met a cute boy in her dreams. *gag* Before she went all hair and boy crazy last night, she made brownies for me and Eli. She made a whole batch just for the two of us and another for mom and dad. They were really good! She also said she's giving up bread because of all the carbs. She didn't eat any of the brownies she made. Me and Eli have a bet on how long that will last though. Next time mom makes waffles, Elyssa will give in for sure. They're her favorite food. Eli says she'll give in before the weekend and eat a brownie, but I think she'll last a little longer than that, unless mom makes waffles.

Elyssa also had a really good suggestion to break up our on going Battle of the Breeds, as dad likes to call it. She said we should get a dog from the shelter because they need good homes. Me and Eli thought that was a great idea, so we all agreed to get our pet from the shelter. I hope we get to go soon, but mom said we probably can't go this weekend after all. I'm actually in the hospital. The fever came back late last night, and I did not feel well at all this morning. I didn't tell mom because she was already really worried about Eli's appointment with the neurosurgeon, but grandma noticed as soon as she got to our house. I hugged her, and she made me go lay down on the couch. When she took my temperature, it was 103 degrees! She called mom and dad and took me straight to the hospital. Elyssa was still sleeping. We kind of forgot to tell her, and she freaked out when she woke up. At the hospital, they did a blood count to see how many blood cells and platelets I have, and my white blood cell count was really low. Now I'm hooked up to an IV getting antibiotics. I guess now will be a good time to catch up on my homework! I think I'll start with math and work on that until dad and grandma come to visit. Dad said he will bring me some frozen yogurt! I asked him to get red velvet cake flavored yogurt and put some of Elyssa's brownies on top! Yummy!

Over all, my day has kind of been like my sister. Sweet and sour. Grandma brought my goodies to the hospital. She really does bring the best presents! I got a new dress for my American Girl Samantha doll, a box of fancy truffles, and a new hat that grandma made. Plus, dad and grandma are bringing frozen yogurt. All of that pretty much makes up for how much the fever sucks. It's down to 100 now though. I bet the frozen yogurt helps even more!

Wednesday, March 9, 2011


We've had a very busy day today! First, mom took me and Eli to the doctor. I had a fever yesterday, but it went away. Mom still made me go get checked. The doc says I'm fine though. I don't have an infection, but she wants me to wear a mask any time I'm not at home. Then, it was Eli's turn. Usually, the doctor takes mom into a room without us to talk about test results, but Eli asked to hear everything. They tried to make me leave too, but I wanted to be brave like my brother. The first thing that happened was the doctor took us into a room with a big table. Mom sat in the middle, with one of us on each side. We all held hands. Then, the doctor started talking about a lot of stuff I didn't really understand. When mom started to cry, Eli put his arm around her shoulder. I couldn't help it, I started to cry too. Mom asked us if we wanted to leave, but Eli said he wanted to stay, so I stayed too. Eli stood behind mom and me so that he could hold us both. The doctor told us that Eli would have to have brain surgery to remove as much of the tumor as possible and to test it to see what kind of tumor it is. She said he will have to get a full body scan to see if it spread anywhere else. When the doctor finished talking, Eli looked at her straight in the face and said, "Be honest with me. What are the chances that this has already spread somewhere else?" She said pretty high. Mom started crying more, but Eli squeezed our hands, cleared his throat and said with confidence, "We'll win this fight. Henleys always do." I was so proud of him! He gets the body scan and goes to meet the neurosurgeon tomorrow. Mom is taking Eli, and our grandma is coming to stay with me and Elyssa. We like it when grandma visits because she always brings us presents! I wonder what she'll bring tomorrow...

After the doctor appointments, mom took me and Eli out to lunch. Eli wanted to go to Fazoli's, but I still taste metal all the time, so I wasn't that hungry. At least, I wasn't until I discovered that Fazoli's breadsticks don't taste like metal! I think I ate about 10 of them! They were so so good! Eli got the sampler with lasagna, spaghetti, and alfredo. Plus he ate more breadsticks than me. He's such a pig. I got a kid's cheese pizza. I think mom was just really happy that I ate something that tasted normal. I'm going to ask her if we can go back for dinner.

We didn't get to go look at puppies yet because mom didn't want us to go out in the rain, but she just said we can go this weekend! I've had two more fights with Elyssa about what kind of puppy to get, so mom said Eli gets to be the tie breaker. Elyssa baked him cookies to try to bribe him to side with her. Eli keeps saying that if we fight one more time, he's going to get himself a hamster instead of a dog for the family. He's kidding though. I think... Maybe I should do his chores, just in case!

Uh oh. Mom is yelling at me. I haven't done any school work since Monday, and she threatened to take my computer away. I better go do my homework!

Monday, March 7, 2011

Some good news and some bad news

The good news first! Mom says we can get a puppy! :D I want a golden retriever, but my sister wants a chocolate lab. We have to decide soon. We're going to look at puppies tomorrow, and mom wants us to pick one then. Some of them aren't ready to leave their moms yet though, so we might not get our puppy tomorrow. We already agreed to get a girl puppy, but mom says we have to agree on the breed by tomorrow after we go see the puppies. I really want a golden retriever! I even have pajamas with a golden retriever on them! I'll ask Elyssa to take a pic of me wearing them later.

Now, for the bad news. My brother's cancer is probably back. He has a tumor in his brain and mom said the doctor told her his blood work was "abnormal". He has to go to the doctor on Wednesday for more tests, but he's not scared at all. Eli is so brave! He told me and Elyssa that he's been getting headaches and feeling dizzy for a few weeks, but he didn't want to worry mom because I have to have surgery soon. He had neuroblastoma when he was 2, lymphoma when he was 6 which caused him to get bone cancer when he was 7, and kidney failure when he was 10. He had to get a transplant! Our cousin was a perfect match, so she donated one of her kidneys to him. She's 16 now. Eli has always been really brave. When I was sick when I was little, he always held my hand. He taught me to read while I got chemo when I was 4. He's such a great big brother!

Friday, March 4, 2011

Interesting day today

I had to get chemo today and have an x-ray to make sure the tumor in my leg is shrinking. Mom let me get a new book to read while I waited. I decided to get the new Diary of a Wimpy Kid book, The Ugly Truth. I like it a lot so far. Greg Heffley does some of the dumbest things, and it always makes me laugh! He reminds me of my brother sometimes. My brother sometimes tries to trick me into doing things for him like Greg tries to trick his friend Rowley, but I'm not dumb. I don't fall for it like Rowley. Maybe I will watch the movie again tonight. I got it for Christmas, and I've watched it a million times, but I still love it!

Once I went back to the infusion room, the room where everyone sits while they get their medicine, Elijah waited with me while the doctor was talking to mom and Elyssa. He was kind of grumpy though because he had a headache. They called me back before mom and Elyssa were finished, so Eli went with me to have my port (where the chemo goes in) accessed. Then, the craziest thing happened! When they poked my port with the needle to check my line, Eli passed out! That's never happened before! Eli's had more chemo than me, and he never passed out because of a little needle prick before. It doesn't even hurt, and he knows that, but he still passed out! Elyssa laughed at him when she found out. I did too, after I knew he was okay, but mom was really upset. She made him go to the emergency room, even though there were a bunch of doctors right there that all said he didn't hit his head that hard. Trust me, his head can take a harder hit! It's really hard! I know Elyssa has hit him harder than the bump he got today. But, mom freaked out anyway. Turns out, it was a good thing that he passed out because of the needle. When they checked his head in the ER, they found a tiny tumor on his brain. Now, he has to go see our doctor to see if he has cancer again. I really hope he doesn't. Mine came back this winter and Elyssa has only been in remission since last July. Eli has been in remission for three years.

The good news is the tumor in my leg is shrinking. I might have to have surgery soon to take it out, but we have to wait until the bone heals more from when it broke a few weeks ago. I was rough housing with Eli and it just popped. Mom says the sarcoma made my leg weak. Now, Eli doesn't play rough because he knows it will hurt more if I hit him with my crutches.

Mom said me and Eli could have whatever we wanted for dinner tonight, but I didn't feel like eating. The cisplatin that I got through my port today makes everything taste like metal. Blechh. Eli always takes advantage when mom says we can have whatever we want. He ate Cool Ranch Doritos and about 30 mini powdered doughnuts. He eats so unhealthy when mom lets him pick what he wants. I'm kind of hungry now though. Maybe she will let me have an ice cream sandwich. Hey, at least I'm having some dairy, right? *evil grin*

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