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Wednesday, February 4, 2015

MRI Results

It is with a huge sign of relief we share the news of a stable report.  The bleed in her pons is still visible, but stable.  There also appears to be  another small spot similar to this, but in a new area.  We expect to see more changes the further out we get from treatment and they will simply add to the list of things to watch.  There are a lot of things to watch  now, but as long as none of them are getting larger we are happy. 

It was decided that it is time to move forward with Growth Hormone for Avery.  At 6 years old we are only 31lbs and 39 inches tall.  In the last 3 years we have not put on much weight and hardly any height.  Averages for 6 years old is roughly 45.5 inches tall and 46 lbs  -- we are well below that and not even showing on the charts in terms of growth anymore.  From what we have been told, Growth Hormone is a daily shot that Avery will get until she is 18.  It is extremely expensive so we are starting the process of working with our insurance to get approval for this.  We haven't talked to her about this yet -- more specifically the daily shot.  The company that we get the Growth Hormone from will come to the house and show us how to do this, so at least we will have some training.  Been a while since I used my nursing skills.

Next scans are in early June and by then we should be able to see some changes in her if the GH works like it's supposed to.  We are excited for her to grow but at the same time nervous to loose our little peanut.  There are of course concerns that can come up with using GH and we pray that we for once have a smooth ride through this next phase of things.  We appreciate the hordes of prayers that have been sent these last few days as we waited out not only scanxiety, but the 5 year milestone that the statistics represent.  5 years ago, we were given a 25% survival rate for children her age with Medulloblastoma.  That means 25% of the patients her age (1 yr old) were expected to be alive after 5 years.  It hasn't been easy, and the cost has been high -  but we do not regret a single decision we have made along the way and owe our strength to all of you - our supporters for the last 5 years. 

Happy 6th Birthday Baby. 


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