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 radition.
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.
I will have links to various ways to purchase items or donate money in ads on the page set up within a couple of days.
In the meantime, if you happen to come across this blog and have a few bucks you want to throw our way to help us save for treatments for Bea, it'd be much appreciated. The Paypal email address is firstname.lastname@example.org.
Thanks for reading,