Only 2 more days of the dreaded STEROIDS…

Today was tough!!!!  Mia is very sad at the moment, she is irritable about the most irrelevant things… tonight she had a complete meltdown because her teddies have to be lined up on the pillow next to her, like they are queing for a bus, but everytime she laid her head on the pillow the teddies moved!!!  She is totally unable to understand a) why the teddies won’t stay still and b) why she cares if they stay still! She does know that it wouldn’t normally bother her, and all I can do is expain that the grumpy medicine is making her upset about the Teddies and that they don’t mean to keep moving!  She is also physically exhausted and has done little more than sit on the sofa all day, she went to bed this evening at 5.30pm which probably means she’ll be up lots tonight! but she was just so tired.  It is so sad to see her so sad… but there are only 2 days of steroids left and it will take a few more days for her to get over them But hopefully by the end f he weekend she’ll be feeling happy again.  Her blood results today showed a dramatic platelet recovery with them now being 301 (they were 40 on Wednesday), however her neutrophils are down to 0.0 it doesn’t get much lower than that!  We are keeping our fingers crossed that opportunist infections don’t attack.

On a lighter note our friend Paul West has set up a fundraising page for Mia’s fund, he will compete in the Western Beach Race on 11th October 2009.  On Sunday we enjoyed a couple of hours on the beach taking photos and watching him ride along the sand pulling wheelies!  It was very exciting, please visit his fundraising page by clicking on either photo.  Thank-you.

 

 

 

 

 

 

Finally the Cancer Research UK Race for Life 2009 is launched so…..Ladies please click on the Logo to find your local Race and join in!  Regular visitors to this website will know that Mia received her “Little Star Award” from Cancer Research UK in December 2008.  Please support someone running the race for life if you yourself are a man, or are unable to Race.  (The word race can be supplemented with walk, crawl, or hobble….. You don’t have to run! :-) ).

13 Responses to “Only 2 more days of the dreaded STEROIDS…”

  1. Grandma Says:

    Hello Mia,
    Just the thought of you and the awful grumpy stuff that makes you feel so sad makes me sad too, so seeing you on the beach with Paul and his beautiful motor bike helped a lot. I will sponsor him for you, let’s hope lots of others will too.

    Really like your pink hat!

    Love, Grandma XXXXXXXXXXXXXX

  2. Lucy Says:

    Hello Mia
    I have just read the January diaries for the first time in a while – you are all being so brave! Tell Mummy that I reckon that Florence is up a lot more in the night than you are, she is such a pickle at the moment!!! I hope the grumps pass soon flower, lots of love Lucy xxx

  3. Stuart Hopkins Says:

    Hi mia,sorry to hear those nasty grumpy pills are upsetting you and your teddies,they don’t mean to fall out of line they can see your upset and won’t to snuggle into you when you put your head down.
    Just think by the weekend your be back being cheeky and dressing up and wow look at you next to that massive motorbike,I bet that was loud when he was doing wheelies.
    Big hugs stu x

  4. Tessa & Harry Says:

    Hello all…..you all keep leaving me stuck for words….. I echo what everybody says…that you are all brave and just keep going and there is nothing else that you would choose to do… however little lady it makes me sad too when that grotty medicine torments you and your teddies at bed time when you are soooo tired and gives you sore legs in the middle of the night. thank goodness that you all take the windows of opportunity when Mia is well to get out there and do the things that can make you all smile…. Harvey sounds like he is doing a great job of being the big brother….(Nanny said so!!) he is a little star too for having that part to play and I am sure helps keep a degree of normality around the house….. i say it everytime, but I honestly do think of you all everyday and check in every night to see any news….lets hope for a weekend free of grots and a little lady doing what she does best…making everybody she comes into contact with smile…………xxxxxxxxxxxxxxxxxxxxx

  5. Lea White Says:

    Bianca sometimes gets like that on steroids, once sat there crying uncontrollably because her dad said that her baby sister couldn’t wear a dressing gown to go to sleep. This week we’ve been lucky so far and have only had to deal with the massive appetite and a “I’m hungry”, “when is supper?” every 5 minutes.

    Big hugs to you all. Not long now then you are done with steroids for this phase and then once you reach maintenance it is only 5 days a month.

    It is horrible when they are like that, but before you know it you will get through this too!!!

    Praying those counts come up quickly!

  6. Anne Martin Says:

    Hi All

    Just to reiterate Michelle’s request to all you lovely ladies out there young old whatever-register for the Race for Life it’s a really great day and for a fantastic cause- often very moving as many people are taking part because of personal experiences and their stories are written on their race numbers pinned to their T shirts, so tears are part of the day along with lots of smiles.

    Believe me you don’t need to run, I have taken part for the last couple of years with some friends at the Waffesdon Manor Aylesbury venue and I am not a runner, walking is more my style its’ only 5K (approx 3 miles).

    This year my best mate Pip has registered us both for the “Moon Walk” which takes place on 16th May in London during the night, 13 miles (oh my god I must be mad-only kidding it will be a great experience) – all in aid of Cancer Research-best I get myself into training!!!!

    Mia’s Nana

    Big hugs and kisses for Mia-hope you are feeling a little better and your Teddies are behaving!!! Love you lots. Nana XXXX

    X

  7. Mark Edgson Says:

    Hi Mia,
    Lewis is just coming down off the steroids and not getting too moody and grumpy now. He is still eating well but no late night currys this week so far. Make sure the Teddies dont step out of line. Keep well and keep smiling Mark, Keeley, Lia and Lewis

  8. Lia Says:

    Hi Mia!
    I’m Lia, Lewis sister.
    My mum and dad have told me all about you and i have just read your blog and think you are very brave.

    Keep well
    xxLiaxx

  9. Tracy Says:

    Hi Mia,
    I hope you are feeling less cranky. The photos of you and mum on the beach are really lovely. Simon is very similar when it comes to lining up Teddies – ask yourself one question, ‘Do you want to grow up to be like Simon?’. I think we both know the answer.

    Lots of love T and Tad and Simon xxx

  10. Tracy Says:

    I have registered for the RACE FOR LIFE – The Rocky style training routine is about to begin……

    http://www.raceforlifesponsorme.org/tracymikich

  11. tracey docherty Says:

    hi mia,
    I do hope by now your teddies are all being so good for you and that you are feeling a whole lot better, you look lovely in your pics on the beach,
    love tracey (grandmas friend) xx

  12. Tessa & Harry Says:

    Hi All, I do hope that you have all had the chance for a family weekend without the interuption of infections etc.
    look forward to hearing from you soon……lots of love xxxxxxxxxxxxx

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