My name is Brianna and this is my web page

My name is Brianna and this is my web page! Be very patient as it is a work in progress.

I was born in June, 2007. I have a twin sister named Alexis. She lives with my parents in Denton, TX. They come and visit me whenever they can. I live with my Grandma and Grandpa an hour away in Denison, TX.

I have some special differences that my sister, and most other people, don't have.

I was born with a brain tumor and hydrocephalus. When I was three days old, I had surgery to have a VP shunt placed in my brain to drain the excess spinal fluid that was causing the hydrocephalus. It started working right away and since I was doing so well, the doctors let me go home from the hospital when I was 12 days old. I had to have regular MRIs done to monitor the tumor, but the doctors didn't want to do anything about it right away because I was so little.

But, in November, the MRI showed that the tumor was growing and my doctor decided that it was time for it to come out. So, in December, when I was just 6 months old, I had surgery again. The doctor got all of the tumor out. He said that it was the size of my mom's fist. When the pathology report came back, my family was told that the tumor was a high-grade mixed glioneuronal tumor. It is very rare and I am the youngest ever known to have had one. It is not a distinction that I enjoy.

Anyway, because this type of tumor is very aggressive and can grow back, my doctor referred us to a neuro-oncologist and he said that I needed to start chemotherapy. One week later, I had surgery again. This time it was to implant a med-port in my chest. I began chemo on January 15th. My chemo cycle is sort of confusing, but here it is...

Once a month, for two months in a row, I get cyclophosphamide. I have to be hospitalized over night for this.
Every week, for six weeks in a row, I get vincristine. This is done as an out-patient unless I'm already in the hospital for cyclophosplamide. After six weeks, I get a two week break from vincristine.
Every third month, I get cisplatin and etoposide (VP-16). I have to be in the hospital for two nights for these. After these, I get a three week break from all chemo.

Then, it starts all over again. There are six cycles of chemo for a total of 70 weeks. Twice, so far, I've been delayed getting chemo; once because the hospital didn't have any available beds, and once because I was sick. So, right now, if there are no more delays, I will finish my chemo in May 2009.

A couple of other unique things about me: I am legally blind, I have cerebral palsy, and I am fed through a G-tube. Don't let these things scare you though because I am also very friendly and happy most of the time. I pretty much have my grandparents wrapped around my finger. They are spoiling me, so I've heard. I have several therapists that visit me every week (physical, occupational, speech, and vision) and I have a nurse, Shana, who is here three days a week to help out. These people love me too.

I have a caringbridge website that my grandparents keep current with a journal about my treatments and how I'm doing. This page is just extra - background, happenings, and pictures. Thank you so much for visiting and please take time to sign the guest book on my caringbridge page. We love to know that I'm being thought of and prayed for.