Over a year since transplant

My apologies for not keeping up to date on the blog. I have had a few requests lately for an update on Seth's progress. Life has been blessedly boring so there hasn't been much progress to write about as you will read further, we are stuck. So here goes.
In August, Seth passed his 1 year anniversary since his transplant. This is great because one year post transplant means that if the cancer reoccurs, they can actually do something to help him. If it reared its ugly head before this time was up, there wouldn't have been much hope left.
Our life is very routine at the moment which has its good points and its bad points. We are still required to attend hospital every week. Wednesday is usually our day there. Every month he needs to get a blood product called IVIG which is a little boost that his immune system needs. Every couple months he has a bone marrow aspirate. So far so good with no cancer detected. It would be a very rare thing to find cancer whilst someone has graft v host disease. So that is the bright side of him suffering through this side effect of transplant.
The last time he had a bone marrow aspirate done, we arrived at 7:30am and weren't taken through until 5:30pm. You can imagine what a little boy on steroids faced that day waiting with no food in his belly since dinner the night before. Not an easy day. We arrived home around 8pm and by 3am the following morning he had a temperature. So, back to hospital we went.... long story short, we spent a few days in hospital and it seems it was a post GA temp - nothing serious but boy were we tired!
He is still on a high dose of steroids and we just seem to be unable to wean him off them. Every time we drop past a certain point, the graft v host disease flares up again. It is incredibly frustrating as our life is in a type of holding pattern. We are unable to move forward and all the boring rules post transplant still apply as they have to keep his immune system suppressed. Any illness can have devastating consequences so we continue to keep him as isolated as we can while trying to give him a childhood -  even so, it feels like his childhood is just slipping away from him and us. He is now 10 years old and he has been battling this since he was 6. That's a long time for a kid.
Seth is still on many meds and they are constantly trying to change them around to see if anything will help him with his GVHD. At this stage, even one of the strongest immunosuppressant drugs is not helping. In my visit to hospital today, the doctors are getting frustrated with the lack of progress. He is now booked in for a PET scan next Thursday so they can get a better look at what is going on. They are now checking for chronic diseases to make sure they only need to concentrate on GVHD and they haven't missed anything. They also have him booked in for another scope if they feel they need to investigate further. As they continue to depress his immune system, he is prone to getting illnesses easy and infections easy and it is a constant worry for us.
He has two ingrown toenails which is another weird thing that can happen post transplant. They give him a fair bit of pain when they flare up but the doctors won't remove them because it can become a source of infection.
As far as Seth's bones go, he has had another round of treatment for the prevention of bone collapse if he develops avascular necrosis. He has another due next month and that should wrap that little problem up. It won't stop the necrosis occurring but it should stop his bones collapsing if it hits him.
Other than that, life consists of home schooling, every other free day. Seth still fights bouts of nausea, tiredness, aches and pains, diarrhoea, skin problems etc. He is not able to do school work everyday because of this but we are trying our best to give him a decent education. Seth has not attended school for nearly two years straight and he didn't have much time at school before as he got sick half way through year 1. This will be another battle he will have to fight when he is well enough to return to school.
His growth is still stunted. Taylah is towering over him and Sienna has bypassed him as well. He is still carrying extra weight because of the steroids and he is still hairy from the cyclosporan. He is shy because of his appearance and says that he wishes he could just look like himself again.
So, we are not moving forward in any way, shape or form, but on the bright side, we are not moving backwards either. We just keep plodding on.