Friday, October 26, 2012

Lots of Updates

OK, so a lot has happened in the past month so I'm just going to post a list of it all. It'll be a mix of good, bad and in-between with running commentary per list, depending on how strongly I feel about it today. It won't be in chronological order either.

1. Kiki from the Fresh Beat Band called Bea a couple of days ago and was as sweet as can be. Bea was thrilled to talk to her. And, a package from the band arrived today full of fun things for the kids. Bea gave whatever didn't fit or she didn't want to Lewis. He was happy to get the scraps.

2. As of yesterday Bea is formally out of the Pittsburgh trial. I have no idea when the decision was made. The team that runs this trial never told us specifically. I found out from Bea's neuro-oncologist in Atlanta. I'm disappointed at this treatment of Bea and our family. My guess is that this decision was made a couple of weeks ago and I'd like to have that time back. We need it to figure out what's happening next and time is something we may not have much of.

3. Bea is being home schooled and has an amazing tutor. As long as she's on steroids there will be no school for her but, honestly, with the way she's holding on physically right now, I don't see her going back unless we find another therapy that can either cure or give her another "honeymoon".

4. She has regressed significantly since her birthday and can no longer stand on her own, much less walk. She is on steroids and the dosage is being reduced bit by bit. So far, that's been OK. But, she's visibly very, very sick. She has been stable for the past 2 weeks but that's about as good as I can say. Today she cannot walk or sit for long periods of time. She drools constantly. Her right side is almost completely numb. She has trouble with bowel movements and that upsets her more than anything else.

4. Bea has a swallow study on Monday to determine if any food or drink is going down her airway. If that's the case we will have to change her diet immediately. Her doctor here thinks it's possible because her voice often sounds watery.

5. We took Bea to Disney for her birthday. It was a pretty good trip but not as magical as in May, when Bea was almost totally healthy. Also, Chris got food poisoning and, well, a couple of days weren't pretty. But, Bea did get to meet Minnie Mouse and Pluto. She got to go on safari and bought another half dozen stuffed animals. So, she and Lewis came home happy.

6. We have found 1 open study at the NIH and are in discussions to participate. There are 2 other studies open, one of which she is not eligible for yet. I'm waiting to hear back from the other. Both could be good. Last year I would have said there's no way we're going to take her from trial to trial. However, Bea has been asking some more specific questions lately about her physical state. She has not asked about death but seems more interested in finding a way to get healthy again. She is very keen to do so and I feel that if this is her wish then we have to do it and take another shot with a new trial.

7. Bea had her first "art show" at our yardsale 2 weeks ago. Our next door neighbor organizes a neighborhood wide yardsale every couple of years and we always participate. Bea asked to sell  her art at the sale and I told her that I'd do better and put up an art show for her. She sold several pieces to friends of ours and even one lovely lady who was just looking for a bargain! Bea was thrilled and used some of her earnings to buy a toy the next day. Lewis also sold some of his old toys and was given that money to buy a new toy as well (with a few bucks thrown in from mom).

8. Bea is back to making art but not freehand drawing. We have found that stencils and stamps and colorful tape are great ways for her to make art with her limited physical abilities. She can't make art all day like over the summer but she still enjoys it and I'm glad she and I found something creative that she can do.

So, it's a lot to put in writing but it's been awhile and, honestly, I'm pretty burned out. For some weeks it seemed that Bea had a new issue every day and I spent a lot of time catching up with them. And, now I'm waiting for the other shoe to drop.


  1. Thanks for the update. We have been thinking about you all since the yard sale. Hoping that you all get some good news about another trial! Please tell Bea that Dava and Baby Nora say hi!

  2. Praying for you guys everyday. thank you for the update, hugs and kisses to you all


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