Thursday, 8 December 2011


It's like now I've started, I can't stop writing.

An incredibly wise person recently said to me that when people have a seriously ill child in hospital for a short period of time, they go in, hopefully get better, then come away. And from that point the parents talks to everyone about it; it's their therapy.  But with a child undergoing the long treatment for leukaemia, you come out of the hospital after experiencing all of these things - seeing your child undergo all of these horrible and stressful treatments, combined with the drudge of sitting in an over-heated, dry ward for days on end - and you wait for the next time.  You don't let out these emotions.  You don't talk about it.  It's not over yet.

She said I need to vent.  This is it.

I wonder if, when this finishes, I will collapse?

The needles are a sore point.  Ha ha, pardon the pun.  My daughter is also Asperger's, which adds an extra difficulty to the treatment that she has to undergo.

She is scared of needles.

From her admittance in January, we started to count the needles, agreeing that she could be bought things when she reached certain totals.  This may sound horrible to some, like some grotesque incentive.  However, we did this because she regressed into a toddler state every time the doctor needed to draw blood or put a cannula into her for drips/drugs or transfusions.  We were trying to persuade her that good could come out of the bad.  The first few times she would get in my face and scream that she hated me.  This was fair enough, as I hated me at that point too.  Probably because I am her mother and I could not stop these things that she was terrified of, these things that had to happen.

It got to the point where they started to sedate her.  It did not help that her veins are incredibly awkward and they would always need several attempts to place a cannula. 

Leukaemia/cancer patients eventually have a permanent line put into their body.  This is internal and can either be accessed by a quick needle push (portacath) or they have a line that emerges externally (hickman).  My daughter had an operation to have a port put in after she finished the first 4 week induction phase of her chemotherapy.  They can't have it before, even though it is much easier than using a cannula to access the vein, as it is an infection risk at a time when the patient is particularly vulnerable.  

Instead, she had over 40 needles. When her arms became too bruised, she had them in her legs and feet.  

These are the things I have glossed over.  I have walked away and bottled up my daughter's arms being too damaged to take any more needles, and her having to have them in her feet instead.

She walked away with new computer games and a whole set of nail varnishes that she'd 'earned' through endurance.

Now she has a port, we put emla cream on it before she goes for a blood test or chemo.  This numbs the area.  It is then painless to put the needle through the skin and straight into the port sitting underneath.  It is just below her rib cage.  We are very thankful for it.

She did regress with needles; now she accepts them graciously.  Yes, they still frighten her and she still becomes upset when she needs one - her blood is still checked by finger pricks - however she is so mature about it.  She is extremely brave and I am very, very proud of her.  She has endured things this year that none of us would want to. Although, if it could be me instead of her, then I would do it in a heartbeat.

Please remember, when reading this, that although these things are brutal, they are a million times better than being left with leukaemia.  I remember when I was a child (which wasn't, I promise, that long ago) that getting leukaemia meant death.  The only person I knew, a boy a few years older than me, died.  The survival rate was very low indeed.  The treatments now are so much more advanced.  My daughter's survival rate is 90%.

Although, when you are dealing with your child's life, any percentage 'survival rate' is the scariest thing you will ever encounter.  As soon as percentages are involved, it is scary shit and you welcome any needle that might make them well again.

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