Wednesday, August 22, 2012

Off to Pittsburgh Today

Bea and I are off to Pittsburgh, hopeful that the MRI will look good and that Bea will be able to continue with the cancer vaccine trial. I'm trying to be optimistic but it's hard. We've had so many bumps in the road this summer. And, now, Bea has a terrible head cold that's making her tired.

She came home from school with this cold on Friday. The the steroids have a side effect we weren't told about. Steroids are anti-inflamatory and reduce swelling. So, for that they're great. But, we did not know that they also suppress one's immune system and reduce body temperature. We sent Bea off to school last week not knowing that she would be more susceptible to germs. Had I known this I would have has her tutored for the first 2 weeks of school, until after this trip today. Hindsight is 20/20, of course.

I get really frustrated some days that doctors don't tell you what commonly happens when one is on a medication or about the side effects of a procedure. And then they blame the parents for not asking the right questions. It's very beaurocratic. Dot your i's and cross your t's but make sure you don't say more than you have to. C.Y.A.....

Apparently, getting colds is common with steroids. I found this out when I took Bea to her pediatrician yesterday to get her cold checked out. He told me without thinking twice about it. Bea's oncologist didn't say a word about what it would do outside of fixing the hydrosephalus.

So, it's not Bea wouldn't have taken the steroids. It was that or surgery. So, duh that's a no brainer. But, seriously, a little help, please?


  1. How frustrating! It drives me crazy when doctors do that -- and it happens so often. It infuriates me that when you have multiple doctors working on complex or multiple issues that they can't figure out how to coordinate care. Ugh! I often ask nurses to explain things because I've found they sometimes have a broader perspective than the doctors, especially the specialists. You & Bea are in our thoughts and prayers for a safe & successful journey. I'll keep my fingers crossed. Hang in there.

  2. Yes, nurses seem to have a better handle on communicating details in my experience. It is so hard to know what questions to ask with so much on your mind. During chemo, I was put on Ativan for nausea. It is usually prescribed for anxiety, but has been found to help with the nausea associated with chemo as well. I'd never had anxiety meds before, so I didn't know much about them. After my treatment was over, I was having terrible anxiety problems and thought I was going crazy. It would have saved trouble if I had been told about withdrawing from the Ativan. Just wanted to let you know you aren't alone in the lack-of-information department! My best wishes to you and Bea :-)


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