Thanks to everyone who continually shows an interest in how Seth is progressing. We are very grateful to have such caring and thoughtful people around us.
Seth is doing well. We are fortunate to have a wonderful hospital system that will come out to visit us weekly for the line flushes and blood tests. This means that we have gone from having to be at hospital weekly to only having to go monthly. They promised me a break this year and they are true to their word. This is a huge burden lifted of my shoulders and I am very grateful.
Seth is still dropping his medications bit by bit. He is now on a dose of 5mg of steroids (which felt like it would never happen) and he is stable on it. He is losing his chubby cheeks and his cuddly tummy and it is really uplifting to see how excited he becomes when his pants fall down around his ankles because his tummy is shrinking.
This week we are dropping another immuno suppressant drug and we hope he has no adverse effects.
He has had a lot of niggling minor health problems but nothing detrimental. Life is running smoothly at the moment. We spend the week doing home schooling as best we can and try to spend the weekend having fun. As Seth is still immuno suppressed all the rules about being out in public and eating out apply. He is awaiting the day he can eat some KFC.
Seth has of late had quite a bit of leg pain. This affects his ability to sit still and concentrate on school work and we are struggling to get through what has been set. The drs are doing tests of his bones to see what is causing it but they believe its probably due to his medication.
The last bone marrow biopsy came back clear!!! Another is set to happen in the next month or so.
Seth had some psychological testing done as I was noticing some difficulty in his learning. I assumed it was to do with his medication as he had started a new one. I was told that radiation and the strong chemo that Seth had can cause some learning difficulties. So the testing was done. Turns out the radiation and chemo has done some damage to his ability to absorb information. This is long term and he will not recover from this. He finds it difficult to keep up when listening to someone talking or explaining. This will affect him at school when the teacher talks. He will be stuck on trying to understand the first sentence when the teacher is up to the 5th sentence. He is good however at visual learning so this needs to implemented. Fortunately there are program's in place just for the oncology kids who are affected in this way. I have been assured that he will be supported by the hospital all the way up to getting a job. This is some comfort but in the meantime I am on a steep learning curve as to how I and his distance ed teacher can help him out the best way we can.
We have taken the leap of faith and booked a holiday for winter to Thredbo. Seth has always wanted to see snow, so we are going to stay in it for a week. This is really exciting for all of us and it gives us something to look forward to. We haven't done anything like this up until now because we always have that threat of Seth getting sick. It is still there but I think we feel more confident and positive about the future. This year for us is about having fun together as a family. We've gone too long without it and its time for a change and some optimism.
