Thursday, January 12, 2012

Meet Bea

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 sweetbeafund@gmail.com.

Thanks for reading,

Helen
Bea's Mommy

7 comments:

  1. Bea will be in my prayers. May you find the perfect treatment for her and be at peace with all of your decisions. Have you checked out Dr. Burzynski's clinic. I have followed a couple of other angels with DIPG as well as one precious boy with NB. I recently saw a post on his website about this place: May be worth checking out, though you have likely seen info about it as I am sure you are searching to the ends of the earth. Love and many many prayers. http://www.burzynskiclinic.com/

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  2. I have checked out the Burzynski clinic. Thanks for the mention. I have some friends in the medical field who have informed me that he's under investigation for insurance fraud. I also called them and the person on the phone couldn't care less about my daughter's cancer and just wanted to email me a packet. When I followed up with a simple question about how to qualify for the trial I got no reply. I'm pretty skeptical about that place.

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  3. Helen, I knew you and Bea at St. Cats. I have my own business, www.yourdreamshoes.com. I would like to do a show that benefits Bea. If you have a moment, could you contact me so we can plan it?
    You and your family are in my thoughts constantly.

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    1. Hi, Sarah,
      Yes, I'm interested. I need your contact though. Can you email me at sweetbeafund@gmail.com? Thanks!

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  4. I wish you and your Family truly all the Best!!!!! When I can I will donate as well. Things are difficult here too but I admire your courage and just remember that through the darkness always comes light!!!! Little Bea will make it just fine!!! Hang in there and be Well All of You!!!! There is Always Hope!!!
    XOXOXOX,
    Joanna

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  5. Hello Helen, I am so sorry to hear about Bea, I will keep her and your family in my prays, I would like to donate some cutting boards for you to sell or maybe a % of my sales. Please let me know which you would prefer. My email is margerydb1@yahoo.com and phone is 401.345.0006.

    again I will keep your family in my prays. Keep your chin up and take care of yourself.

    Margery

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  6. Oh Helen, I am a customer of yours from last year. You designed some graphics for my etsy store that I never had a chance to open because I was diagnosed with cancer. I decided to take a new direction with the store and went back to see if you were still open and found a link to little Bea's site. I am so, so sorry. I just purchased the rainbow painting from your shop & hope that it helps a little.

    - Kayla
    http://owlyouneedishope.blogspot.com

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