Hello everyone x
So, as from my last post, I went into the New Year with a heavy heart .. D has been doing so well and the thought of the New Year was tough .. would this be a good one for us? D had his routine three month scan on Sunday. We received a call on Tuesday to say that some re-growth had been found in a different place - they have said it is small. We have the hospital on Wednesday to find out more. D hadn’t been too great over Christmas and said he felt ‘different’ and did call our nurse after Christmas. He has been given antibiotics as he has been feeling tired with headaches and also a swollen and weepy eye. He has also has blocked sinuses … they said it could be a virus and said to go to the GP for the antibiotics. It’s difficult to not think it’s connected to the new growth .. or just a coincidence? We will find out more on Wednesday and I’m trying to make sure we all keep ‘level’ and not jump to any conclusions - it’s ’business as usual’ and a weekend of sport for our boys! However, Wednesday seems a long time away … fingers crossed 
HI Edmund1
nice to hear from you again. Sorry to hear that things are changing.
What you described could well be steroid related. Steroids definitely impact mood/behaviour and if the dose is being reduced it may be that you have dropped below the current optimum dose that's needed. Its a lot of trial and error with steroids from our experience.
The tremors you mention made me think back to the focal seizures G suffered from for the last few months of his journey. It wasn't tremors as such with him but the hairs on his arm would stand on end then he would zone out for a moment or two. The doctor put them down to being focal seizures. Have you mentioned these tremors to the dr?
G did begin to lose his motor skills over the last few months of his journey and his hands would shake when he was using his cutlery at mealtimes. We put that down to tumour progression but in the short term the steroids did help with that for a while.
I hope that's been helpful. I always worked to the one rule - if I noticed a change however small that concerned me, I would call it out to the medical team.
sending love and light and hugs to you all
Wee Me xx
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