Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.
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Friday, September 08, 2006



Conference Results

Our conference this afternoon ended up being Daddy, Mommy and Dr. O. (the oncologist). In many ways, we are still trying to process it. We didn't get all our questions answered, but had some good conversation. I'm getting tired, so forgive me if I ramble or don't make sense.

Apparently, our request for a Radiologist couldn't happen. Radiologists just don't attend meetings like that and there is no incentive for them to do so. Ugh! It would have been nice if we had been told that when we made the request.

Dr. O's gut feeling says that there isn't anything to worry about. We'll do another pet scan fairly quickly (probably week after next) and see what it shows. Some of the areas of "hot spots" are areas that commonly have activity, so they aren't really areas of concern. There are some areas, however, that we wouldn't expect to be hot spots - specifically an area in her right jaw. The numeric values (SUV) associated with all the areas (including the jaw) are very small, which wouldn't typically indicate tumor. Even a small tumor would generally have a much higher SUV. A small tumor might be too small to be seen on the pet, but once it showed it would have the higher SUV.

We talked about different scans and some whys and why nots about which scans are being done. The scans we have been doing meet the national "standard of care". We talked about possibly adding additional scans (or potentially changing existing scans), although no decisions were made.

It looks like we will be going to Seattle for a second look at Rebekah's scans. We figure it doesn't hurt to have another set of eyes looking at her scans and it might help us feel better about doing everything we can for our own peace of mind. They will probably be ok reviewing her existing scans and we won't need to redo them, so hopefully it could be a short trip.

Meanwhile, life continues... Rebekah had class this week and they continued to work on testing. We still have no results, but I hope we will have them soon. Rebekah really enjoys school. Every day we leave, she asks for more.

We took Sarah's binky away from her this week. We have been telling her that she is getting to be a big girl and big girls don't need binkies. The first night, she cried for a couple of hours asking for her binky, luckily Rebekah was able to fall asleep during Sarah's screaming. The second night she asked for her binky for about 10 minutes. The third night, she asked for it, but didn't fuss too much. All in all, it hasn't been too bad. I'm amazed. She turns two next weekend, so I figured it was about time to give it up. It seems that the terrible twos have started (at least in some ways).

Thanks, again, for your continued prayers and support. It keeps us going.

3 Shared:

At Saturday, September 09, 2006 3:49:00 AM, Blogger Alison Left a thought...

Well I'm thankful that his feelings about things are not bad. I'm also glad that you are going to get a second opinion in Seattle.

Praying that you will get the answers you are looking for and that Rabekah continues to enjoy life! Wonderful news about school...

 
At Saturday, September 09, 2006 4:15:00 PM, Blogger Julie Q Left a thought...

Sorry to hear the radiologist wasn't there. I am glad to hear you are getting another opinion.

That is wonderful Rebekah is enjoying school so much.

And also yay for Sarah giving up her binky. :) What a big girl she is! It sounds like she did pretty good giving it up.

 
At Sunday, September 10, 2006 8:15:00 PM, Blogger My Kid's Mom Left a thought...

Thanks so very much for the update. When will you be going to Seattle?

 

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