Much of this blog has been one point of misery and despair after the next. Unfortunately, this has been our journey. It does not mean that another child will have the amount of infection/hospital stays that daughter has had.
Anyway, one thing that has been a positive side of the last year is the internet.
I am incredibly thankful that, throughout huge periods of isolation, daughter has essentially become something of an internet celebrity in her own right.
She plays on an much-advertised, international game. She has been on the leader-board for months. Though, in fairness, she does have a lot of hours spare! I remember reading a book about excellence being cultivated by so many thousand hours of time spent honing a certain pursuit. She is very, very excellent at it!
I will give you an example: she created a profile page on there 3 days ago, and so far it has had 93,000 page views. That's a bigger circulation than my local paper... although, her profile is probably more interesting (sorry paper ;-) ).
She has a blog (89 followers, 13,000 page views) and she and I have started to write some short stories for teenagers as her peers seem to like that sort of thing, and we both enjoy writing. (I will admit, she is much better than me!)
If you want to read, shameless plug, it is called 'dark days and dreadful nights':
http://darkdaysdreadfulnights.blogspot.co.uk/
These figures I am citing may seem like small fish in the international waters of the internet. I am pretty impressed by them though.
So, take a girl with cancer and give her a laptop. She now has people fighting to be her friend; she has gained confidence and self esteem; she has hardened her shell too when she gets the occasional nasty comment or situation. She is far from stupid: she knows the rules of internet safety. This experience has allowed her to develop her own likes and dislikes, to formulate her own moral code (she has written blog posts slamming evidence of discrimination against women, racism), and to give her back her self-esteem after what has been a horrible time for her.
I am also proud of the comments she gets from peers, who tell her she is "kind and approachable" unlike other leader board figures. (Ah, the politics of a virtual world.)
For once then, might I be a parent who is happy her daughter spends hours on the internet? I am thankful for it. It has given her a social life that real life has tried to take away from her.
It has empowered her when she feels most powerless.
Saturday 5 May 2012
Wednesday 2 May 2012
Sick, sick and more sick
I am off again today as I have tummy bug, thanks to daughter who picked it up at school yesterday.
We've been ticking along recently. Her counts are a bit higher, but they have dropped her chemo dose down. I'm not sure what this will mean for her leukaemia though.
We've booked a huge holiday to celebrate the end of treatment next year. We're taking kids to Disneyland, Florida, staying in Animal Kingdom Lodge. I was so excited when I booked it, although a touch daunted about finding the cash. We will be living on beans for the next 15 months! We wanted something to be excited about after what has been the most difficult couple of years ever for all of us.
On a sad note, we lost a little boy who we knew from clinic. I am so very sorry for his parents. he was a lovely, lively little chap and it once again reaffirmed how cruel this illness is. We've also heard of other children who have had bad news in terms of relapse and survival. :-(
It is difficult unless you are a cancer parent to understand the stress you go through being surrounded by this world. My life is a mixture of pretending to be normal (attempting to go to work, shopping, cooking, washing) juxtaposed with a stream of hospital stays, extreme worry and bad news.
I feel a little bit sick most of the time.
Except today, when, because of the bug, I feel a lot sick.
We've been ticking along recently. Her counts are a bit higher, but they have dropped her chemo dose down. I'm not sure what this will mean for her leukaemia though.
We've booked a huge holiday to celebrate the end of treatment next year. We're taking kids to Disneyland, Florida, staying in Animal Kingdom Lodge. I was so excited when I booked it, although a touch daunted about finding the cash. We will be living on beans for the next 15 months! We wanted something to be excited about after what has been the most difficult couple of years ever for all of us.
On a sad note, we lost a little boy who we knew from clinic. I am so very sorry for his parents. he was a lovely, lively little chap and it once again reaffirmed how cruel this illness is. We've also heard of other children who have had bad news in terms of relapse and survival. :-(
It is difficult unless you are a cancer parent to understand the stress you go through being surrounded by this world. My life is a mixture of pretending to be normal (attempting to go to work, shopping, cooking, washing) juxtaposed with a stream of hospital stays, extreme worry and bad news.
I feel a little bit sick most of the time.
Except today, when, because of the bug, I feel a lot sick.
No shit
http://apps.facebook.com/theguardian/society/2012/apr/30/teenage-cancer-trust-survey-delayed-diagnosis
Read with interest. This has been a problem for nearly every patient that I have met, both from the teenage and children's cancer wards. It is not good enough. So many of the parents are dismissed by their GPs as overprotective loons.
I realise it is hard to identify cancer in a child. However, if you have a parent repeatedly telling you that something serious is wrong, it might be an idea to listen to them and trust their judgement. True, some might be attention seekers. However, if pandering to them means that genuine cases are referred quickly, then it is a cheap price to pay.
Read with interest. This has been a problem for nearly every patient that I have met, both from the teenage and children's cancer wards. It is not good enough. So many of the parents are dismissed by their GPs as overprotective loons.
I realise it is hard to identify cancer in a child. However, if you have a parent repeatedly telling you that something serious is wrong, it might be an idea to listen to them and trust their judgement. True, some might be attention seekers. However, if pandering to them means that genuine cases are referred quickly, then it is a cheap price to pay.
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