Is this our second home?

We are back at kings. Vega had a temperature of 38.0 last night at 11pm, and then 38.3 at midnight. This warrants a dreaded call to toni and guy, our home from home at kings, and as expected we were ordered in immediately.
The reason for this fever is not neutropenia, Vega’s neutrophils are well over 4, which is good news, but she has caught a plain old rotten cold. We all have it- cough, sore throat and fevers- I believe Alys was the culprit, or “the cat that dragged it in”. But whereas we can all deal with it at home, in the comfort of our own duvets, complaining more or less depending who you would talk to, poor Vega has to be ferried to the hospital in the middle of the night, in dreadful weather as it was last night. She was accessed by the night on call doctor right away who concluded that she very likely has the same virus that we all have too, but nevertheless our old friends gentamicin and tazocin, the first line antibiotics, or as the nurses call them “taz and gent” (like a bbc comedy duo) were started right away.
Vega’s port had to be accesses and even though we did prep with our magic cream she let out a blood curdling scream (possibly only curdling my blood) when the needle went in. I remembered that I just wrote about pain, or the relative absence of it during this treatment and I just thought “Kathi you are such an ignorant twat”. Because there is so much pain that Vega has to endure, day in and day out and I barely even notice anymore, maybe due to having gotten used to it, to holding her whenever she is poked repeatedly like a pincushion or maybe because Vega doesn’t complain or screams that often. I felt terrible.

The antibiotics had to be started regardless of the fact that really she is just having one of those viruses that your gp would never give you antibiotics for and send you home slightly peeved off and annoyed about having made the effort to go to the surgery in the first place. The risk that Vega could develop a bacterial infection on top of whatever she has now is too great. But the antibiotics alone are making Vega feel worse and just 6hrs after commencement she now has diarreha. It is like a vicious circle that is hard to escape. You are ill, the medication you are getting is making you feel worse but it can only be stopped once you are feeling better… Hey sounds very much like the whole cancer treatment regime!

Anyway, no use pondering it too much. We are here now. I dare not to mutter these words but let’s hope it won’t be too long this time.

I was surprised actually that Vega’s neutrophils were still going up, after all that chemo she had last week. The IV methotrexate has hit Vega hard and she has been very nauseas and sick all week. She didn’t eat anything during the days, but then suddenly seemed to have an appetite in the evening and ate dinner. Even her anti sickness meds didn’t seem to help with the nausea. Her mouth is ok-ish I guess. No ulcers yet but her gums have been bleeding a lot and so does her lip.
Here in hospital Vega has quickly resumed her hospital eating habits, ie nothing. I think her mouth must feel sore a little because she doesn’t even want crisps.

This is not exactly the half term week we had envisaged and I feel particularly bad for Lyra who woke up again this morning without her sister in the bunk next to her. It is hard to imagine how she feels about about all this, she very rarely talks about this. But I did take her to the doctors last week because she has now complained about tummy aches for a good two months. Now after Vega’s unexpected and shocking diagnosis I am a paranoid wreck of a mother. I have always been very worried anyway but now this has reached a new high. Alys having a bruise on her ribs, Lyra having tummy aches.. Could it be something serious? More leukemia? Another type of cancer?
The only thing that gets me back to the ground of reassurance is the thought that no one could be so unlucky. Or deal with so much crap at one time.
Hence I have put off having Lyra seen until now, but I also suspect that her tummy aches are anxiety related and I think me taking her serious, taking her to the doctor might be a step into the right direction. The doctor has done nothing to reassure me and ordered a urine sample and a blood test in ten days if the tummy aches have not resolved, because as he said “there is obviously a family history (arrggh how I wish it was history already!) and this can not be taken lightly”. Thank you for that. I did think along the line already anyway.
Lyra has not had a tummy ache since then.

So here I am spending sleepless nights in hospital, worrying about all my children, and realising once again what cancer has taken from us and is taking every day. That easy living, taking health for granted that now seems ludicrous and I wonder how I could have every been so naive.

The view from our window, adding gloom.

Path of least resistance.



3 thoughts on “Is this our second home?

  1. hello dear one,

    and so it goes on again – the relentless journey with it’s peaks, troughs, gulleys, rockfalls, mountain tops, whirlpools, landslides, open fields, tornadoes, stinging nettles, poppies, mud, slush, clear pools and seemingly insurmountable treks…..

    yay to the neutrophils and pooh to the poo! As for the screams – gosh i hear both sides – my friend said that it is awful to hear, and having been there i also know that despite the pain the screaming feels good – a great outlet, so whilst i am in no way underestimating how horrendous it makes you both feel it is heartening to hear she can let the pain out too.

    that photo outside your room i recognise!! you think they at least paint a mural on it eh..

    kathi i was wondering if lyra’s school has access to a therapist?? having worked with so many kids who have had worries in the family i’m not surprised that she feels it deeply in her gut – and so wondered what support is there for her – like a play therapist? art therapist DMP etc etc so she has a little space to explore her worries? Do you know the little Mexican worry people/ think they are Mexican or maybe Guatemalan – anyway it’s a little tiny bag of teeny people in a bag that children put under their pillow – the idea being they take them out before they go to bed and then whisper their worries to them and that the people take care of them when they sleep – i have some somewhere i could send. sounds a bit magical i know but helps some children. there is also a lovely paperback called ‘the huge bag of worries’ to read that helps children realise worries can be shared and not all theirs. again i have a copy i can send and have used it with kids with all kinds of anxieties.

    as for the hospital/food thing crap i bet she just switches off at the thought at their food – have they ever given you a menu that had pictures on it (prob have) maybe pics would help??? clutching at straws i bet.

    so am sending you a donkey that you can climb up on and let it do the walking/journeying for you for a bit. when you get time send me your address and i can at least send a card please.

    hugging you all xxxxxxxxxxxxxx

  2. Oh Kathi, you write so beautifully and from the heart about such a horrific and horrible heartrenching situation. I wish I could scoop you and Vega up and somehow make it all go away. Seeing her looking so tiny in that big hospital bed makes me want to weep. I don’t know how you are managing it. If there is anything I can do for you, please ask me. Beckyxxxx

  3. Dear Kathi
    I’ve just read some of your blog- as Grace recently told me you were writing one. Vega is so incredibly strong and brave, as are you and ray and her sisters.
    Have been thinking of you often in last few of months,

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