First Day of New Treatment - April 21

Hi everybody -

I started my new treatment today at Children's Memorial hospital. I like St. Jude a whole lot better. First of all, it took almost 2 hours to get to the hospital cause there was so much traffic. I was bored ALL day! I wish I could just go back to St Jude. Plus on the way home I was really sick to my stomach but they said its the medicine that does that. After a while I felt better but I wasn't very hungry. I'm just tired so I'll let my parents finish this.

Note from mom Jennifer:
Brianna is right, we were definitely spoiled at St. Jude. We are not saying that Children's is not a wonderful place, but what you experience at St. Jude can not be put into words. While heading home during rush hour traffic, Brianna said she would rather fly back and forth to St. Jude and that she doesn't like CMH. I am sure her irritability and most of the words can be chalked up to her emotions/feelings pouring out as she begins a new treatment. She felt terribly nauseated on the way home but did not vomit. As frustrating as it is to listen to Brianna complain about anything and everything I have remind myself that it's not Brianna...it's the tumor and/or the medication. Her nausea only lasted for an hour or two and later that evening she was talkative and laughing hysterically as she watched Funniest Home Videos. She did not feel up to eating any dinner so she had some applesauce before bed. Brianna slept with me and as she was falling asleep began listing all of the foods she was craving. Around 2 AM she woke up and decided she was ready to eat. I went downstairs to get her a bowl of cereal and some nausea medicine. She slept off and on until 11 AM where she finally perked up and made Miso Soup with Seaweed for lunch. (I find it hard to believe that she can complain about every single thing on her diet that Bob and I find delicious, yet she enjoys the most disgusting soup I have ever smelled or tasted!!)
IMPORTANT: THE ANONYMOUS CHEF OF THE GINGER, CHICKEN NOODLE SOUP LEFT A COUPLE MONTHS AGO IN OUR COOLER NEEDS TO IDENTIFY THEMSELVES OR LEAVE AN ANONYMOUS RECIPE!!! IT'S BRIANNA'S FAVORITE DISH AND SHE CONTINUES TALKING/ASKING ABOUT IT!!
I am going to let Matt take over and talk about the medical part of it all and what he knows....

Note from dad Matt -
Alright.... I guess I am the relief pitcher here so here it goes.
We got in at 8:30am and met with a nurse to take all the vital signs, height, weight, etc. Then she had a blood draw to get sent to the lab so that we could make sure her WBC and Platelet levels were good enough to start treatment. That took about a half an hour before the results came back and all was fine there.
We were lead back to the Day Hospital where Brianna was hooked up an an IV to make sure she was hydrated with fluids for an hour before the CPT-11 (one component of the treatment) was to be administered. CPT-11 is also known as Irinotecan which is meant to damage the DNA and RNA in each cancer cell so that it doesn't have the ability to divide and multiply. That takes about an hour to administer and then more fluids were given before the Avastin was admisitered and that again was a little over an hour. Finally a fluid IV and an antibiotic was given and that took 2 hours so needless to say it was a rather long day. For the next day or two she may experience some nausea and fatigue.. there are other side effects but those two are the most common.
One thing that Brianna was given was MC Contin which is a controlled release of morphine and that should help her feel as comfortable as possible. She has her regular dosage of pain meds if that controlled release doesn't control a larger pain episode that Brianna might experience.
We are planning on doing an MRI of the spine just to get some more insight into what might be causing her back pain. We are still committed to continue to look at all options including biopsy. I believe that the only way to get to a cure of this disease to biopsy the tissue to see what is actually in the tumor. Other countries like France and Germany already do it as a matter of course when a patient is given this diagnosis. We would just need to find a doctor in the U.S. that would be comfortable with doing the procedure.
We will continue to keep everyone updated as we move forward but we really appreciate everyone stopping in and offering their kind words of encouragement. It gets us through the rough days when Brianna is not feeling so great. It means alot to us.
Matt, Jennifer and Brianna