Seth

Seth

Tuesday, May 20, 2014

Central lines are gone!!

Only good news to share with this post. We have come leaps and bounds in the last couple months and it is so encouraging and such a relief.
Seth was having trouble with his central line. The flesh was beginning to grow out of the opening in his chest and it was starting to bleed and weep. He was suffering from a lot of pain - so much so that I couldn't even touch his chest around the hole without him gasping in pain. He asked the doctors whether he could get the lines removed and they agreed that it was time for this to happen as long as Seth was prepared to have blood tests and cannulas (when needed). Seth wholeheartedly and happily agreed as he just wanted the lines gone. Tuesday last week they were removed with no complications and today we remove the dressing from his chest.  This is a huge step for him and the future is looking bright. We are back in hospital tomorrow for a check up and blood test so we shall see how he goes getting a needle now.
As far as his medication goes, he has been able to drop yet another immune suppressant drug with no sign of the GVHD returning. We hope this result continues. They will be testing his immunity (somehow they can do it with a blood test) tomorrow and we will know whether we can start to relax a little on the isolation he has been needing for the past 2 years. He will need to be re-immunised before they will allow him to be completely free from isolation so I'm sure I will get a little more information in regards to that shortly.
When Seth had his lines removed they also tested his bone marrow for cancer and once again it has come back clear.
Seth is full of energy these days and I am getting glimmers of the boy he once was. He is doing flips and walking on his hands and jumping off anything he can climb. He is doing his crazy dances and getting on his motorbike and flying over jumps. It is a blessing to see.
As far as school work goes, he is causing me a lot of grief. It is a battlefield every time we sit down to do work. He gets upset easily when his brain doesn't work the way it used to anymore. He is frustrated that he cant remember the things he learnt the day before. I just don't know how he is going to cope when he returns to school.
We are getting excited about our snow trip now as it gets closer and closer and we braved the Aldi snow sale and got everything we needed for a great week together. Seth and the girls can't stop talking about it and counting the days down on the calendar. Life is pretty good right now :)


Finally Has His Lines Out

Seth Getting some air on his new track at home

1 comment:

  1. This is wonderful reading, very happy for you all, and SH Seth!

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