Friday, July 20, 2012

One Step Backwards

I wish I had good news to post again but, unfortunately, that's not the case. It's been a breezy 5 months all considering and a few backslides were bound to happen.

Bea has hydrosephalus, also known as "water on the brain". She started exhibiting worrisome symptoms early this week. We were at the shore with my family and Bea couldn't walk for any real length, was falling a lot, could not change direction easily and said that her right hand was feeling a bit numb. She was also getting more headaches than usual. This all happened very quickly.

Bea and her dad went to Pittsburgh for her 6th treatment on Thursday. An extensive MRI was done and it revealed two things. First, she has hydrosephalus and it has to be treated today. Second, there is an area in her brain that is showing either a new growth of cancer OR an area where her T-cells are attacking the cancer. If it's the latter that's really good news because the vaccine is working. But, it's impossible to tell right now.

So, the bad news is that her participation in the trial has been suspended. She got no vaccine yesterday. The good news is that she's still in it and will be returning on August 13 for another analysis.

But... the big bad news is that Bea will be admitted to Scottish Rite Hospital today and will have to endure a minor surgery to treat the hydrosephalus. She doesn't know this yet and hates being in the hospital. I know she's gonna flip out when we get there and she realizes that she's not leaving right away.

I'll post details on what's going on as soon as I can.


  1. Oh no :( This just makes my heart hurt. Keeping you guys in my thoughts. Please let me know if/when it's ok for Nia to come visit Bea.

  2. Thinking of you all and sending big hugs to Bea!


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