Sorry for my lapse in blog writing, time seems to be slipping through my fingers and I seem to lack the energy to keep up with it at the moment.
Seth is doing well, he has been going to hospital as usual for check ups and things on the cancer front are all positive looking. He is scheduled for another bone marrow biopsy on 12 March and once again there is no need to expect anything untoward in those results.
Seth is on high doses of steroid to control his GVHD and there are serious side effects from being on this type of medication for extended periods of time at such high doses. One that have the doctors concerned at the moment is the effect on Seth's bones. Steroids are known to cause a problem called a vascular necrosis which is when the blood flow to the bones is affected and the end result is bone death. There appears to be no signs that this is the case for Seth, but they are certainly very wary of this condition due to the pain Seth has been getting in his joints (which is where the necrosis sets in)
We have found that his foot pain increases with his steroid dose and decreases accordingly. He was unable to walk apart from a slow shuffle at his worst. This has thankfully subsided and he is now getting about easily and with little to no pain.
The other thing they have found is that (via an MRI) Seth has brittle bones. He underwent a bone density test yesterday to see just how much they are affected. We are still waiting on those results.
The other concern they have is with his blood pressure which read a massive 163/100 yesterday. This is due to steroids and Seth has begun a medication to help level out his blood pressure.
Apart from the above, he is a happy little boy who, in his own words "just wants to be normal". I have put on the school teacher hat and sit with him for a couple of hours each morning to do school work. He loves Dynamo the magician and spends some time every day trying out magic tricks and illusions. He spends time teaching our dog Ruby tricks. She now knows how to catch and how to drop dead when we say bang. He is trying to teach her how to skate on a skate board. Quite a challenge but he is up to the task. Seth is also practising his touch typing skills and his guitar. As he is on steroids once more, he is an avid helper in the kitchen at meal times and has to know what we are having for dinner once breakfast has been consumed. He is a little fatty boom bah again and his hair has grown in dark tight ringlets - quite the opposite to the straight blonde hair he was born with. He has become quite the little bookworm and reads books quite quickly now.
Seth is still has to be isolated from people and crowds. Steroids will make any virus or bacteria 10 times worse if he catches anything so we have to be very vigilant with his health and who is is in contact with. We still need to take care of the food he eats which is much to his disgust (thanks steroids).
The girls are going well, being back at school. Everything seems fairly settled on the home front for them as long as we are home together. They are happy and healthy and bubbling with life. We couldn't ask for more.
