July 31, 2012

Yesterday we had the dreaded MRI, our anxiety at it's high as always.  Especially, since the night before Kass woke me at 3 am to tell me that she needed help because she had thrown up all over the bathroom and her backpack.  She hasn't had an episode like that in a long time where she couldn't make it to the bathroom.  I helped her clean up and after she said she felt fine and went back to sleep.  Thank goodness!


After that I could not sleep, my mind wondered all night and all I could do was worry for what was instore for the morning.  Surprisingly, Kass felt pretty good for the MRI with no nausea, Yeah!! But when we got to the room there was a new head cover for the MRI machine.  It looked like those old diving helmets from the 50's, it was so close to her face; I frieked out!  I went up to her as they rolled her in the tube to make sure she was ok and she calmed ME down.  She said, "Mom, I'm ok" HAHAHAHAHA I felt silly. Forgot, she's NOT claustrophobic, I am.  


After the MRI was done she did say her tummy hurt because she kept having to swallow her excess saliva.  In the last two weeks we have noticed that she's been drooling in her sleep and that she chokes on her saliva once in awhile.  Yesterday I asked some of the other parents with kids with the same diagnosis and they too have the same problem.  I looked a little more into it and saw that it happens in brains stem tumor, stroke, & MS patients who have increased pressure by a tumor or 7th nerve palsy.  The worry is that if it gets worse, she can aspirate in her sleep which in turn cause pneumonia.


Well, today our fears were confirmed.  Kassidy has had a 14% increase in the size of her tumor located by the medulla oblongata and upper cervical spine.  She has 3 spots in her brain stem that have small tumor and one area in particular is the one they saw an increase.  WHAT A BLOW!!!  This is the first time since we started treatment that we have had increase of any kind.  A set back!  I immediately broke down and couldn't even see straight.  Thank goodness Ryan happened to be with me since it's his last day of vacation before her goes back to work tomorrow.  


We came home to wait for Dr. Burzynski plan of action.  Ryan reminded that Dr. B had said that by lowering the dose there could be a chance were the tumor would fight back and increase.  Of course, you never think it could happen, especially since she's had such a great summer.  In May the pet scan showed that her tumor is no longer cancerous, but this does not mean the benign tumor cannot grow.  Which is exactly what's happened!!  Dr. B would like to attack the tumor by going back to full dose slowly and wait 4 to 6 weeks to see what the higher dose does to the tumor.


I also, wrote Jessica Ressel, an old patient of Dr. B who had a very similar situation happen to her.  Her tumor increased twice, but then completely went away.  She is now in her 20's and she was 11 when diagnosed.


I cannot tell you how disappointed all of us are at this time, especially our Kass.  She could see the finish line and now she's back at a "what if".  We have reassured her that we will continue to fight as long as it's needed.  We just wish we could take it all away once for all.  But this is God's plan for now!  So we will walk by faith!!


Please, keep her in your prayers as we FIGHT on.  And if you get a chance please give her a word of encouragement as her world has been changed once again.