Meet Beatrice, a lively, smart, funny and adorable little girl living in Marietta, GA - just outside of Atlanta, GA.
Beatrice is six years old and has lot of friends, some from school and some pretty much her whole life. She loves to play with everybody, pretty much. Bea is happy to play indoors and out. She loves to draw, bake cookies and play with her little brother Lewis, who is four. Her favorite thing to eat is edamame. Second best is broccoli. Third best is pizza. Then sweets. Yes, seriously. No lie.
Beatrice was diagnosed with DIPG, diffuse intrinsic pontine glioma, a rare, aggressive and almost always terminal form of brain cancer. The diagnosis was made on December 17, 2011. We took her to the local ER because we thought she was dehydrated with the flu. That's how fast and sneaky the symptoms are. We had no idea she had a tumor. The situation was so bad that I was air lifted in a helicopter to a local children's hospital within 90 minutes of our initial ER visit and she had to have an emergency tube put into her brain to prevent stroke. If I'd put her to bed instead of calling the doctor, like I seriously considered, I don't know what would have happened that night.
Four weeks of hospital care and physical rehabilitation and she's still not 100%. As of today Bea can walk but not run. She can't walk up stairs by herself. Her balance is off. Her short term memory isn't 100% either, which frustrates her because she's very smart and usually loves to talk about her day. She can recall with prompting but without is difficult.
She is undergoing radiation and our hope is that all of these life skills will come back with healing and therapy.
However, this terrible disease that she has always comes back, sometimes very, very quickly. It could be weeks, months or a couple of years with just the radiation.
So, we're looking into clinical trials and have found a few that are promising. The purpose of this blog is two-fold. One to tell her story from my point of view, the mom. Some stories are going to be full of heartache and aren't going to be easy to read. Others will be uplifting. That's the ups and downs of having a child with a terminal illness. I'm hoping, praying, thinking, whatever it takes... to erradicate this disease from her body. It may sound insane but I would love for someone to tell me that it's chronic, not terminal. That would be music to my ears.
The second purpose of this blog is to fundraise. I've taken an unpaid leave from my job and may have to quit. We're looking into clinical trials where there are all kinds of related and peripheral expenses. It's going to take a lot to save her and I hate to think that the reason we can't would be a lack of funds.
UPDATE: May 5, 2012
Beatrice is doing well and is back in school. She has been accepted into a clinical trial at Pittsburgh Children's Hospital and we are traveling there for 1 night every 3 weeks for her to receive treatment.
I am back at work and getting some good support there. So, life has improved since I wrote this post. But, I know that it is highly likely that this improved life is temporary. DIPG almost always comes back and usually within a year of diagnosis. So, right now I'm enjoying my time with Bea and Lewis and Chris and trying not to think too much about what may lie ahead.
Thanks for reading,