Untitled

I am tired. I was too tired these last few nights to blog, and instead I slept.
We left the hospital on Sunday, having been fever free for almost 48hours. They sent Vega home once again on a 7 day course of oral antibiotics but without the Tamiflu. That stuff is seriously nasty. Vega had terrible tummy aches and restless nights with weird dreams. On day 2 she started vomiting. Before we were discharged on Sunday the haematology registrar told us there was some concern about Vega’s liver enzyme counts.

Do I dare try to explain? Please bare with me as I am no expert. There is an enzyme called AST which is being released by the liver when damage occurs. The normal range for this enzyme is 0-6. On Saturday Vega’s count was over 2300. Now, as expected chemotherapy is not great for the liver in general. Many chemotherapy drugs are metabolised in the liver and a certain degree of damage occurs all the time. The oncology team keeps an eye on blood counts and liver panel counts weekly for this reason. Children on chemo commonly have raised AST counts and as long as the Bilirubin counts are low (this is the stuff that actually turns you yellow and gives you jaundice), nobody is worried. But raised AST counts are usually around 60-100. So >2300 was freakishly high and rang alarm bells. It could indicate an acute medication induced hepatitis, liver cancer, or what the shit else. Apparently the counts had fallen to 800 on Sunday, and so we were discharged, with orders for bloods on Monday and a liver ultrasound on Tuesday, back at Kings.

I do not have to tell you how freaked I was. Well they let us go so it couldn’t have been so concerning, right?

Anyway, Mondays bloods showed AST at 233 and the ultrasound was called off. What had caused this mega spike of AST on Saturday is anyone’s guess. But my money is on the Tamiflu, which I told the haem reg before we were discharged. They wanted to send us home with 10 days worth of Tamiflu but I asked if there might be a correlation between the counts and the drug, seeing how Vega was keeled over with stomach pain while taking it, obviously it affected her strongly. And then they send us home without it.

Vega has been ok, she is off the steroids again too and recovering from the flu just fine without the rotten Tamiflu stuff.
Now Lyra has the flu, although I thought she had it already in the middle of December just before I came down with it. But hence the tiredness, I always seem to be awake with one feverish child or another.

I am also tired of the worrying. It is just constant. We have been in hospital twice during the last three weeks. The liver. The flu. Another child with the flu. The foot, the limp. It just never ends and I am tired. I try to build myself up with positive thoughts, but one thing or another happens to knock me back. I try to tell myself that this is what it is like to be a mother. If I wouldn’t have a child with cancer I had other things to worry about. But is that true? Would I worry as much? Would life be as tiring?

I feel like I should be apologising for my moaning. But then I remember my first ever blog post and my intent to misuse this cyber diary as a dumping ground for my complains. You have been warned then.
I often have thoughts about gratefulness. That maybe I should be more grateful. That Vega is still here, alive, and not lost. Lost to cancer or a car accident or some other tragic event. That many parents don’t even have the struggle anymore. That all they have left is the loss. And I am, I really am grateful.
But this too is a very cruel fate. I speak to people almost daily about Vega and so often I am being asked “is she going to be ok?”. What am I to say? Yes? I don’t know. How am I to know. I hope so, wishing for it with all my heart. And as treatment goes on it seems more likely she will be. But every hospital admission, every fever, this nasty little doubtful devil creeps up and whispers “is this the time? When it all goes wrong?” The uncertainty. Some days it feels as bad as a loss. To even be forced to think about or talk about it, with any odd person I meet in the street. The life prospects of my four year old child.

And this I am so tired of. A tiredness that is not remedied by sleep. A tiredness I know will last a long while longer.
And just maybe I shouldn’t be apologising for moaning or writing “heavy” blog entries. You came here to read what it is like, right?
I feel we are overdue a few good days though, don’t you all think?

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5 thoughts on “Untitled

  1. Many good days, Kathi. Many, many.
    This is your space – it is for you, to process to rant, to share. I can only speak for me – I read it to see how you are and if there is any thing I can offer across this virtual place. I read it to be with you in some small way.
    It is cruel. It is unfair. It is draining in a way I can only imagine.
    There is caring here in all who read your entries. By using it for what you need, hopefully you can feel this. That you are accepted in all of this. Whatever that looks like.
    xxxxxxxx

  2. Don’t ever apologise for moaning. You put on such a brave face for your girls, it’s not healthy for you not to vent. And yes, you deserve a lot of good days. I hope Vega and Lyra are both over the flu very soon.

  3. Oh Kathi, it is relentless isn’t it. All I can say is, there it’s light at the end of the tunnel and it will be over one day. Inshallah. Feel free to use me for anything you need.

  4. dear Kathi, I often read but rarely comment, so I just wanted to say that… every time I do, I’m glad that you have said just as much as you can of what you are thinking, and that somehow sharing it here gives you a little relief. I admire you as always. Lots of my best love. Laura xxx

  5. Dearest one – agreeing with those above and so very grateful that you can speak here – as it really is – I wish i could say that the worry or tiredness disappears – not sure that is always so – BUT i do know that at the worst times people will carry you and help as they can and share the relentless awfulness with you. better days will come – sometimes in dribs n drabs and other times in a wee string and provide some respite. i know so well the tiredness you talk of – it’s been another crap week and i hope some tiny magical moment comes your way tomorrow. sending you virtual hugs and lots of love.

    love to all of you xxxxxxxx sue

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