Courage, people, courage!

ok, so i did not intent to make everyone cry. i know it is a crying shame sometimes, all this. and i do cry too but not actually that much (anymore). today i am blogging while it is still daylight outside, hoping i will produce a more positive post.

as much as this all sucks, i also often think how i am actually lucky- lucky that we found out Vega had leukemia in time for her to be treated, lucky to live in this country where healthcare is available and free, lucky that Vega has a type of cancer that is curable in a great percentage of children, lucky that i have such fantastic friends and family that have stopped at nothing to help and support us. (there are many more things that i consider myself lucky for but lets not push it..)

talking about friends and family- i have actually had two donations through our donate button. one was my dad, trying out the ‘facilities’ and the other person knows who i am talking about. as i said before, i am finding it hard to accept help, nevermind money, but i did put that button there after all. so thank you. when i told Vega someone had sent money for her she suggested we send something as a thank you. i asked her what she thought that could be. she said one of her beads. for those of you who don’t know, Vega means one of her beads of courage. at the hospital (both the marsden and at kings) they are running an ‘art as therapy’ programme called Beads of Courage that was originally thought out by a children’s nurse in the us.  a charity called Be Child Cancer Aware have recently started the programme here in the uk and the number of hospitals taking part grows weekly. it is especially for children on cancer treatment and is essentially a bead diary of their treatment.

the aim is to provide something tangible that a child can use to tell others about their experience during treatment. a story on a string, for others but also for themselves to be reminded of their courage that grows with each bead added to the string. Vega is mighty proud of hers and they have been a fantastic help to explain to her what-happens-when. you get a different coloured bead for each treatment event. white is for chemo, black is for pokes (any needles), lime green is for neutropenia, pale green for x-rays, tortoise for lumbar punctures, yellow for hospital stays, red for blood transfusions… and so on and on. Vega asked me to put some pictures of her beads here so you can all see.

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so, sue, my lovely friend, check your postbox, as a bead of courage will soon be on its way to you- how fittingly.

so yes there it is people, courage. if Vega has got it then surely i should too, and you, you, you, you and you!

i thought it was important to note that we do have some quite normal days. when we are just a normal family, with normal worries (shh shh the c is always there), doing normal things (mainly indoors due to suppressed immunity). so yesterday and today Vega has been ok, during the day she is always a little better and then a little worse at night. with worse i mean she is moodier, seems to have some pains that she can’t really explain where they are or how bad they are, and the cyclo on monday seemed to have caused some mild incontinence issues, as Vega suddenly needed to pee for england but didn’t really feel when :-/. so we had plenty of whining and bed changing. she also had her cytarabine yesterday and today, administered by the district nurses here at home, and one more dose of that tomorrow.

she is sleeping at the moment, in general tiredness is an issue, but one that is expected. she has been eating a little better, not much but i am not concerned as she does ask for food. she has started to eat little baby food squeezy pouches for breakfast, as she doesn’t fancy anything else, but again if it is good enough for a baby it sure is good enough for Vega.

i am also ok today, as my mood is always very dependent on Vega’s ‘wellness’. i do wish though it would all be over already…

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3 thoughts on “Courage, people, courage!

  1. My sweet Vega – I will be thrilled to get my ‘bead’!!!!! the photos are just amazingly beautiful and i cant stop watching them roll thru the box. I have seen the beads of courage but never thought I’d get one and so beautifully thought through boy do i feel proud!! funny when i first saw them on a friends post i thought – crap am i too old to make some?? but then i have my version – my body map, which i hope someday to show to you both. last night i googled the song/incantation and have played it over and over. What wisdom your little one has! oh and when i look at the pics of her sitting cross legged i keep seeing you, on the training, sitting cross legged before me. I smile deeply……..

    Kathi i love your blog and writing – the raw honesty, the way i (am sure others feel it too) can quietly listen in, feel with you, share the story as it unfolds. So much of what you write resonates deep within me and you know why. When i first got sick I spent so much time wanting to know when I would get my feet back, when would the tumour be gone etc etc and my physio said ‘whatever happens, life will never be the same’ well fuck i didn’t want to hear that!! But it is true and as i have learned to pause and be with my body i have learnt so much more (just wish it hadn’t taken a poxy tumour too get there lol). I sense in your writing the beginning of – despite the friggin shittiness of it all – such depth, moving along with the process, allowing it to be there, shoving it out of the way when needed, and just being with yourself in it all. So as i look at Vega sitting with her beads i see you sitting there too, finding a way to weave your story, not knowing what chapter comes next and i am grateful that you find words to tell it and that i know you.

    You are simply a beautiful soul and Vega has a wonderful Mother!!!!!! I will treasure my bead!!!!!
    hugs to you all xxxxxxx

  2. Yes kathi anyone reading this post an doesn’t cry something is wrong or their heart is closed for the day I know as soon as I opened the page tears were streaming down my face as I understand an empathise your journey which is not an easy road as I said. Before keep on keeping on you all are surrounded by angels xxxxxxxx

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