Saturday, May 20, 2006
First I want to say a huge thank-you to Emily, Emma and Shadow who are alwaus so quick with words of encouragement when things are very good or very bad (we hardly seem to get an inbetween! Maybe because we are so busy making the best of the good times). It makes so much difference knowing people are thinking of us and rooting foir us. Willam says a special hello to Nayan - thank-you for thinking about him.
Well, we made it through the day at home by the skin of our teeth! William is still pretty poorly and is coughing and choking himself purple. He is so congested. It is a very long time since I have seen him like this. All the extra secretions that are swallowed are upsetting his tummy as he can't tolerate anything in it. He doesn't really know what to do with himself but has still spent a lot of the day smiling and laughing as usual! He looks nice and pink though as you can see. This is due to the blood transfusion he had on Thursday and is a rare sight as his Hb slowly drops between transfusions and tends to plumet when he is unwell. I think he is a bit flushed and flustered too but it makes him look well!
Paul is away singing a gig in Somerset today and I hate it when he is away and William is unwell because there is no-one to ask what they think of him and how he is. I have to make the call alone and sometimes wonder if I want him home so much the doctors let him home when he is still a little bit too under the weather.
I was catching up with the CF Trust message boards today and learned that a man with a young family has died and another young lad is very sick and his mother is terrified. I don't know either of them but it really upset me. When you are in similar positions you can physically feel the pain they must be feeling. Of course, this kind of news also brings your own agonising fears that you fight so hard to keep at the back of your to the forefront of your thinking.
This is an axious weekend for our family for another reason as well. My Dad had a huge cancer op 2 years ago. He has recently had a lymph node enlarged and had a full body scan 4 weeks ago. On Friday, he had a call to say his results have been discussed at a multi-disciplinary meeting and he has to come in and see his consultant first thing Monday morning. It sounds very ominous. I don't feel stressed though. I don't know if this is because I have been so stressed over the last year that I am spent or because I have learned now that some things just can't be changed and you just have to be positive and make the best of what you do have. I hope it is the latter. It is probably a combination of the two!