HappyHolidays!

 I am so happy for the holidays to be coming up.  This week is going to be hard with midterms coming up and everything, but friday I am free!  A couple days before Christmas my family and I are going on a really cool train ride.  It's a Polar Express train ride where you go in your pajamas and drink hot chocolate while riding and watching the movie.  It is going to be so cool!
   I am stressed about finals, I just have so much work to get finished and reviews to do, I can't believe it.  I only have to actual days of school, but the rest are half days.  I am feeling happy.

Back To School

Thanksgiving was great.  I went to my grandparents lake house.  My aunt and uncle were there too.  My moms sister is ten years younger than my mom and she is extremely funny.  When her and my mom get together they have a ball.
Aunt Mandy helped me choose what to get my parents for Christmas.  I love their gifts and I am so excited!

Happy Thanksgiving!

   I love Holidays in gerneral.  I love spending time with my family and getting out of school to do it!  Usually we spend Christmas with my moms parents and Thanks giving with my dads mom.  This year we are going to spend Thanksgiving with my moms parents.

   I love Thanksgiving because i love cooking.  This year we are going to my grandparents lake house and the have a huge kitchen I cant wait.  I hope I get to make mashed potatoes.  I love making them and I do a good job, I have a secret.  I put a little bit of truffle oil and it makes them taste so good.  I also hope someone makes pumpkin pie, it is my most favorite dessert ever! 

   My grandfather is pretty computer savey and I really want to show him what I can do on this new application I downloaded.  I'm going to make him something special on it.  I think he will be impressed with what I can do.  The application is called Adobe ROME.  I made this poster on it.  I love working on the computer.

Feeling Better!

    Last weekend was awesome!  My family and I went to an 11-11-11 party at a friends house and it was great.  We brought smore stuff and I was in charge of helping all the little kids.  I also got to hang out with my friend Caroline and her friends.  Saturday My cousins Caroline (not the same person) and Kathryn came to see Cole's football game.  We lost but we played really good.  I love hanging out with my cousins.
    Monday I got sick and stayed home.  It was kind of a nice break after a big weekend.  I'm back now though and feeling tired as always!
:)

Excited!

   My yunger brother, Cole has his play off game in football this saturday.  I am so excited because I think my uncle and my cousin are coming to see him play!  I haven't seen them since last Cristmas.  My cousin's name is Kathryn and I call my uncle Uncle Brad.  i can't wait to see the.  Uncle Brad is a pilot and I bet he is flying a plane into Houston and wanted to see us.  I'm just glad he's bringing Kathryn, she is older than me by a few months.  I can't wait to show her around the neiborhood.

No news

  Sadly when I went to the doctor last week they did not give me any new medicine.  They say that the medicine we want has to many side effects.  However!  My mom says we can ware them down, she even said to the doctor, "You know that in a year we will just end up taking this medicine like the growth hormone?"  She was talking about when I wasn't growing.  They put me on a pill that slow down my growth plates to see if that would give me more time but my mom insisted they put me on the growth hormone shot.  You know what happened? I grew three inches in like a year! It was exciting.  My mom will never stop fighting for me.

Back to the Doctor

  Today I'm going back to M.D. Anderson to find out the results of last times blood work.  I will hopefully get some new medicine, but at least I will get to update my doctors.  I don't mind going to the doctor but I wish they could have the appointment a little earlier so I could miss a little more school.  My moms picking me up at 2pm so all I'll miss is Debate class.  Last time I missed all of school.
   My mom and dad were annoying me this morning.  Usually I wake up at 6:30 and get ready, then at 7:00 my mom or dad wakes up and ;ays in bed with me while I eat the breakfast I made.  This morning my parents were up to help my little brother because he had to be at school early.  It was just like I had no space.  My mom started talking to me about Justin Beber and I just wanted to be alone.  Then she guilt tripped me about how I actually don't want her there and she should just leave. Ggggrrrr.  I just like alone time.  Then at the minute before we leave she is like, let me "fix" you.  Now I don't feel cute in my outfit, I was almost late to class and I have tinted moisturizer all over my face.  It's just not what I wanted to happen this morning.  Now I'm feeling down.

Happy Halloween!

    I had a great Halloween last night.  Now I know I'm a freshman but I still love trick or treating!  This was my last year though, I got tons of candy.  Me and Kate went all around the neighborhood getting candy.  When we went back to my house to trade out what we don't like, she told me she didn't want any of her candy!  She left it all for me, I did give some to my brother though.
    I had a great costume, I was medusa.  I made the snakes in my hair by braiding it, wrapping it in wire and then wrapping it in wired ribbon.  I even made my own dress.  I looked scary with the white contacts and snake hair.

    Anyone who knows me knows I love Halloween, it really is my favorite holiday.  I think this year for my birthday I'm going to have a halloween party.  I'm going this weekend to some stores to get all of the cheap halloween stuff on sale.  Happy Halloween!!!

Getting Better

   After a crazy first week of living with my mom knowing about my eating disorder I'm finally making head way.  For the past two nights my mom and I have been dancing like crazy while we cook dinner.  We have so much fun and it is really good exercise.  Not only that but my grandmother said she is going to get me an eliptical machine so I can work out more at home.  I'm feeling better.
I will post pictures from Halloween tuesday!

  I can't wait for Halloween!   I have made the most awesome costume and I can't wait to go trick or treating with Kate.  I'm Medusa and she is a "Holly Cow."  I bought a ticket to wear a costume to school bet my costume wasn't school apropriate so I'm wearing some scrubs and a witch hat. I'm a "Witch Doctor!"  I feel cute.

Busted

I am feeling a little depressed lately.  I have accepted the fact that I'm just pretending to be happy but I'm really just hiding in my room.  I have an eating disorder and I was lying to my mom about it.  I got busted for it and now we are trying to fix it.
     She totally understands me.  She knows exactly where I'm coming from and I feel safe now.  I am feeling relieved that I'm not hiding anything but I am still sad.  Since she found out I think I've just been accepting my depression and not trying to do anything about it.  I'm now trying to fix it.  Today I want to make a meeting with my school counselor to talk about my hard time making friends.
     I think that if I had friends and things to do on the weekends and after school I would be happier.  I really just want to feel happy but I'm not positive how to accomplish that.  I'm trying, now, though.

New Friends

I am so happy!  I have been having trouble making friends lately.  I have never had a good group of friends and it has hurt me over the years.  Now I'm in high school and am still eating lunch alone.  Yesterday I had a breakthrough. This girl at school has been talking to me since the first day of school. I was was eating lunch in the court yard when she asked me to sit with her and her friends.  I was so happy and now I plan to sit with them whenever I can.  It feels good to not sit alone.

New Symptom

When I had my portacath taken out when I was little, the one that popped out, it left a little crater in my skin.  Later when I was older and my tumor started growing again I had another portacath put in.  It was in a totally different spot but the surgeon noticed and asked if I wanted him to fix it.  He did and it looked better.
Now, about four years later, my side is hurting, where he fixed my portacath.  It feels like the skin is pulling on it, it is really hurting today.  My mother says that the scar tissue has built up.  I scar really bad and now I need to like, massage my side to make it feel better.  Grrrrrrrrrr

New Diet

I'm starting a new diet.  I can only eat certain fruits and vegetables and I am not suppose to have any bread or cheese.  I do this for 17 days and then slowly add the bread back in.  The diet is going to help my metabolism and help me loose a little weight.
   The diet is kind of hard because I can't eat a lot of the things I'm use to.  Every morning instead of toast, I eat egg white scrambled.  It is hard but my mom is doing it with me and we have come up with a lot of new recipes.  Last night we had chicken with cucumber salad and broccoli, it was delicious.  We have also made a lot of soups and pureed things.  I think I will do good on this diet.

How to Deal

   Living with hypothalamic obesity is not easy.  You have to eat different, exercise more and simply live a different life style.  I cope with it pretty well.
   I have to eat certain things to stay healthy.  I try to never have more than one bread with any meal or snack.  If you can it's good to have no bread.  Bread turns into mostly sugar.  I have toast or a crumpet with breakfast, no bread with lunch and a generally healthy dinner.  Anything fried is probubly not great.  Salty and sweet things need to be a treat to have.
    I also exercise five times a week.  If you exercise for an hour five times a week you will feel better about yourself.  I swim, walk, and ride my bike.  You can do anything.  Make sure your doing something other than your school gym class.
   It's hard to deal, but we can do it.

My History

     I found out I had a brain tumor at the age of two.  It took m sight in my right eye.  After that I had brain surgery, radiation and a couple rounds of kemo therapy.  I had two central lines in my chest and a portacath that never heeled and popped out of my skin! That was fun.  They couldn't remove my brain tumor because of where it was but they were able to shink it.  After my third round of kemo, my brain tumor stopped growing.  We kept it monitored with an MRI every three months.
     While my brain tumor was dormant, we addressed another problem.  I was going into puberty too young.  It was because of my radiation, and kept under control with a lupron shot every month.  Not fun, but manageable.  This went on for a couple years.  Then the terrible happened, my brain tumor grew.
     I had to go through two more rounds of kemo, in which I managed to break my portacath and it traveled into my heart.  Into the ICU!  I had surgery to take out the portacath and another surgery to put in a new one.  The new portacath worked better.  I got my brain tumor under controll again.
     After finishing kemo they took me off the lupron and let me go into puberty.  The only problem was, it had spead up my groath plates!  I was going to be 4ft. 9in for the rest of my life.  So what do we do? I took a groath hormon shot to help me grow and a pill to slow my groath plates.  The doctors thought I wouldn't grow much, but I showed them!  I grew three inches and I am now 5ft. tall!
    I had fixedmost of my problems, but I had always had a weight problem and now my eye was bothering me.  The doctors told me to exercise, eat healthy, even to stop drinking so much mik!  What they didn't tell me is that I had hypothalamic obesity.  My mom ended up figuring it out, with all her research.   When she talked to the doctors they said that they knew I had hypothalamic obesity.  It made us very mad, but happy to know it wasn't my fault.  I started a kind of diet and exercised more, it kept my weight under control.
     The only thing left was my eye.  I would get a kind of headache behind my eye, it would come on suddently and leave slowly.  I would have to lay down and close my eye's.  On top of that my left eye wasn't tracking with my right eye.  I needed to meet with my eye doctor to see what was wrong, but he was very busy.  So we got an appointment with another doctor that turned out to be the exact right doctor for me.  She treatted cases like mine and was happy to meet with me and my mom.  She diagnosed, and proved her diagnoses on my eye.  She had inly seen it one other time, my eye was having small seizures and I took seizure medicine and it stopped.
   Now I'm a semi- regular teen.  I still have to do a lot to keep my weight under control.  I have stopped gaining weight but I really want to loose some of the weight.  Me and my family are always looking for solutions.  I take metformin and that looks to be helping.  I won't stop looking.

Kate & Madison

We are here and we want to fight hypothalamic obesity, for all of the cancer patients who are still fighting.  Madison and Kate are best friends.  Kate had a stroke when she was a baby, so she knows what it's like dealing with side affects.  She has helped her through so many things.  Madison has been fighting brain cancer since she was two, now her brain tumor is dormant but she is not healthy yet.  We want to find a cure to hypothalamic obesity for all who are still fighting after their cancer.