Wednesday, June 22, 2011

Update - 6/22

OK - so a lot has happened in the past week...

A week ago today, they had Cam up and out of bed which made her quite happy but she was still very sore. She had a follow up MRI Wednesday evening which showed what they expected - there does not appear to be any residual tumor in her spine. She had a play date with her friend Ivy on Thursday in the hospital which really lifter her spirits.

On Friday morning, we brought Cam home! They were kind enough to give her some pain killers and valium before our trip which worked well since traffic and weather caused the ride to take more than 6 hours. We finally made it home to a lovely site as our wonderful community decorated the front ride with posters and balloons!

Since she has been home, she still has remained fairly uncomfortable. It's sometimes difficult for us to remember that she had MAJOR surgery just a week ago. She remained on the steroids through the weekend which caused her to swell quite a bit on top of the lovely impact they made on her mood. Even so, she was happy to be home and see her "girlies" !!!

She started complaining of hip pain over the weekend which seemed to get worse as the day went on. A little ibuprofen and oxycodone made her feel better but she is still complaining of some pain. We had a conversation yesterday with the neuro-oncologist who said that this was not really suprising given the extent of the surgery and wasn't really worried. If it does not seem to get better over the next week or so, we will call and see what else might be going on.

He also gave us the results of the pathology and some information on the next steps for Cam. The tumor was an ependymoma (which is what they expected) and a grade 3 (compared to a grade 2 two years ago). Treating with surgery only is not an option - which we knew. They typically would like to start proton beam radiation about 4 weeks post-op but they can push this a few weeks if needed without a problem. After the radiation (still being discussed is where she will receive it - but it is looking like it will be a "generous" field on her spine), she will do some oral chemotherapy (the extent of which we do not know). We will have another call with Dr Robison later this week and hope to have a more definitive plan in place - but at least we have a general outline which is more than we had last week.

In the meantime, Cam's job is to recover from the surgery. She slept for almost the entire night last night in her new bed (her old mattress was too firm and was hurting her back, legs, hip) so we hope she is starting to get better!

With Love,

Greg, Robin, Caitlin, Caroline & Campbell

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