Since last post we have had our trip to the snow which was exhausting and fun and magical and everything we could have hoped for. Seth and Sienna were very excited once they saw snow. All I could hear in the car was "wow" then the click click click of his camera. Seth took to the slopes on a snowboard like a pro and by the end of the week was traversing blue runs easily. He loves the snow and I have no doubt we will be back. From my perspective it was a long held dream come true. To see my boy being a carefree kid and having the opportunity to share in a family holiday. Don't ever take these simple little moments for granted. Soak them up.
You will notice a new photo above. This is my boy back the way I remember him pre-steroid. He has lost roughly 10kg and looks like amazing. He also was taken off ALL medication. This was a huge exciting step. Seth couldn't believe it. It took about 3 days before he stopped asking me whether I was sure he didn't have to take meds. He has also been given release from his isolation. He has been out and about and has seen 2 movies and been out to a restaurant for my birthday and walking around the shops and eating most foods he has been restricted from eating. He is pretty chuffed at this new found freedom. He is still not quite well enough for school yet but it's getting closer. He is still not making his own immunoglobulin so he continues to need that given by IV. He has also reached another milestone and had his final planned bone marrow aspirate. He has reached 2 years post transplant and is no longer required to have it checked. The results are clear and we couldn't be happier.
As for the little bump in the road, Seth has developed his GVHD once again. The Drs have put him back on steroids - hopefully only for a couple of weeks. He is in a lot of pain, is constantly running to the toilet and feeling nauseas. They don't think this will take him off track with him moving forward with his life, we just need to go to hospital a little more frequently and hopefully the steroids will work their magic sooner rather than later.
