Saturday, June 11, 2011

Update - 6/11

It's been a long couple of nights....

On Tuesday, the steroid dose that Cam had been on since last week, was lowered from 12 mg a day to 8 mg a day. Unfortunately, by Wednesday afternoon she was really not comfortable. We called the hospital and spoke with the attending on call and they raised the does BACK up to 12 mg a day. That seemed to help temporarily. She was still complaining quite a bit about pain in her legs so we gave her a narcotic for pain for the first time since she was diagnosed again. This also seemed to help and I think she actually got a few hours of sleep. A subsequent conversation with her neuro-oncologist actually raised the dose of steroids to 18mg a day (3 pills, 3 times a day). This is really taking toll on her little body as she is quite puffy (which is normal) and her stomach is all messed up. Also, unfortunately, she is still having a difficult time getting comfortable while sitting/laying down so the past several nights have been very long.

Luckily, we head back to Boston tomorrow night and are that much closer to having this thing out of her back and getting on the road to recovery.

Someone asked me the other day if it was easier this time or last time we went through this....interesting question since BOTH suck! But thinking about it a bit further, the answer is - they are just different.

Back in 2009 everything happened very fast. She was not feeling well for several weeks but was functioning at her "normal" level with the exception of the last several days prior to her diagnosis. Also, the time we were told about her tumor to the time it was removed was very short and there was a ton of things to get done in those 25 hours or so. We just kind of went with what the doctors told us and hoped for the best. We didn't have much time to think about what was going on.

This time we have a lot more information. From a knowledge is power standpoint, this is great. We know a lot of the questions that need to be asked, we are familiar with the doctors, the hospital, etc. The problem with this is that we find our minds racing ahead to step 20 and thinking about all the potential scenarios when we need to get to step 2 first. There is also the aspect of the waiting this time. The first thing we want is to get this tumor out of her. It was nice to have the time to come home and prepare for this upcoming week, talk to Caitlin & Caroline and spend some time together. On the other hand, we have had a lot of time to sit at home and worry about the coming week - will she be in a lot of pain, will they get the whole tumor, will she need chemo...? She is also not feeling well - which just sucks! She is moaning and ASKING for pain meds which just breaks your heart. There is so little we can do for her until they do the surgery on Monday morning that it is very frustrating as a parent.

So the answer to my friends question is basically - neither one is better - they both SUCK in every way possible.

We are hoping that Sunday brings her some relief as she is supposed to be dancing in her recital. She has really been looking forward to it and is still telling us that she wants to do it. So we will keep our fingers crossed and the box of tissues close.

Please say a little extra prayer at church\synagogue\mosque - WHEREVER AND WHATEVER YOU PRAY TO - this weekend. She needs all the help she can get!

With Love,

Greg, Robin, Caitlin, Caroline and Campbell

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