Friday, December 17, 2010

Things are getting Complicated

Ok, it is MRI time again. The results are in and it looks good. No new tumor and the spot from last time on his spine really was artifact, it did not appear at all this time. I should be thrilled but we got those results from a Neurologist who was opening new doors. Over the summer Josh has begun to have speech problems. It was suggested that this may have been from a mild stroke so they set up the appointment with Dr. Slopis (yes he is worth waiting 5 months for) Then the oncologist said it was just chemo decline so we kept the appointment to be sure but I thought he would spend 10 minutes with us and then agree with the oncologist so I was not worried. Well this appointment went in a whole new direction.
Joshua has the tip toe walking, now we see speech loss. They feel it is a muscle problem. However the legs are spastic (tight) and the facial muscles are flasid (loose). After this appointment we discovered that there is also a bladder issue that was not noticed that is also a muscle problem. Dr. Slopis thinks this all ties together in some sort of a genetic syndrome but he is not sure what. They are going to get a team together to make a plan on how to diagnose this because the cancer will confuse the problem. Let me stress this is not life threatening but is serious. He feels if we don't know what we are dealing with Josh could have problems later on. An example would be the bladder, if he doesn't empty it right he could have complications later that could be anything from infection to loss of a kidney. Basicly we need to find out what he has and then treat all these problems. So now on top of cancer poor Josh has some genetic problem. Also we thought the tip toe walking was not a big problem but Dr. Slopis says it is. It could cripple him as an adult so we have to know exactly what is causing it so we can fix it. It means that 2011 will have lots of doctors visits and invasive testing and possibly surgery on his legs at least.
I have been making lots of jokes today about this because we can't change it and I do not want to worry Joshua but I can't help thinking that this is not fair. Poor Josh has endured so much and now we are thinking that there is something new. A complication to cancer would have been bad enough but this is a whole new thing he has to deal with and there is nothing I can do to take it from him. He is a good boy and I wish so much he could just have a normal life, play ball like other boys (and like he wants to). Instead we spend so much time with doctors and there is so much he doesn't get to do. There is no point crying over spilt milk but I really was hoping for a quiet year and that is not going to happen. If I could ask you all for a Christmas present I would ask you to pray that they find answers fast and that whatever this is it will not keep Josh from his dreams more than he already is. I would also like to say that even though I am worried and so sad I am not forgetting my blessings. There are many and todays is the good doctor that is on the ball and looking at the big picture not a single detail. If we resolve this is will help Josh's future and that makes it worth it.