Monday, October 8, 2012

Bea Update

Bea is in Pittsburgh today with her dad, getting an MRI and hopefully receiving her 8th vaccine. However, I have my doubts that this will happen today.

Bea has severely regressed in the last 2-3 weeks. At her birthday party she was able to walk around, a lot on her own, and only needed a wheelchair for long distances and to stay safe at school.

Today is a different story. She can't walk on her own. She can stand on her own but only if she's holding onto something with her left hand. And even that isn't for a very long spell. If she tried to walk on her own she would collapse in one step. Her right hand and foot are completely numb. Her left foot and hand are starting to become numb now as well. She can't dress herself or go to the toilet without help. She can't draw and has trouble feeding herself.

She drools constantly out of the right side of her mouth and her speech has slowed. She's more easily fatigued and her eyesight goes blurry now and again. I'm pretty sure her right eye is blurry all the time but she just can't tell.

And she has become fearful to tell me when something about her body changes because she doesn't want to go the hospital for a stay.

So, she's in a pretty bad state. There could be 3 causes - in combination or solo. The cancer may be having a growth. DIPG cancer grows in fits and spurts, which is frustrating. It either grows really fast or not at all and it starts and stops for no apparent reason. It could be her Tcells massing and causing significant swelling. That would mean the vaccine is causing the harm. It also could be that the shunt put in at the end of August is faulty and the hydrosephalus is not being treated. The purpose of the shunt is to treat this condition, also called "water on the brain." It could be all but  if it's not it's definitely one of them.

My guess about what will happen today is that she will be sent home on steroids to treat her symptoms and provide her with some temporary relief. That means no school because they squash her immune system. They also make the vaccine not work at all.

If the shunt is faulty she'll probably stay in Pittsburgh for a few days to have that replaced.

So, today Bea is not doing well. Not at all. So, although I'm not a big prayer person I do believe in something so if you're a believer in something send those thoughts, prayers, whatever her way. She really needs them.


  1. We are praying for Bea and your family. Mariana sends her friend HUGS and love.

    The Mellens
    Mickey, Kelly, Macey & Mariana

  2. We think about Bea every day, but will send extra positive vibes today. So sad to hear she isn't doing well :(

  3. Sending prayers your way and hoping this is a bump in the road for Sweet Bea. Love and Hugs!

  4. Prayers to you Helen. We pray for your family everyday. If you need anything, please let me know.

    Whitney Unterwagner

  5. Sending lots of prayers, love, hugs and positive vibes to envelope Bea during her struggle. She is a super strong girl. We know she will get through this hurdle very soon.

    We love you, Bea!!
    Kathy, Marty, Mimi and Nanette

  6. Sending all the love, prayers, and happy thoughts to Bea and the whole family!


  7. Love, light and prayers for Bea and your family. I have checked in on Bea for some time as a friend from HS shared her story and your page when Bea was originally diagnosed. I was always so happy to check in and see that sweet Bea was doing well. This however, breaks my heart.

  8. Sending all our love. Please let me know if you need help with the garage sale.


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