Intensive!!!

I have worked it out!!!!  Delayed Intensification is INTENSIVE!

The Panto was a great success for 1 hour…. Then it became Mia versus The Cast and for about 5 minutes Mia stole the show with her screams for “crackers or buttons”  (the Jacobs kind and the Cadburys kind).  I was of course desperately trying out all my distraction techniques but to no avail, so eventually I ran from the theatre with a very cross Mia tucked under my arm!  It was very intense!  Scotty and Harvey followed us out with all the coats and we left with Scott and I exchanging very cross words….  The steroids really put so much stress on all of us, mainly because it is so difficult to keep Mia happy and also so difficult to see her sad!  Anyway we headed off into the night with both children asleep in the car and arrived at Mum and Gary’s at around 11pm (kind of good that we had left the Panto early or it would have been about 1am!)  Mia’s grumps had subsided but the hunger had not so she ate more before going to bed only to wake at 4.30am for more food!  She also had constipation this weekend which is very distressing for her and us and resulted in a few more cross words between Scott and I on Saturday morning.  By lunch time on Saturday though we all chilled out a bit and had a great weekend. 

Mia’s steroid side effects had really worn off by Monday and she was back to herself again, desperate to go to nursery and carry on as normal.  Wednesday saw us on the ferry again for the third vincristine and Doxorubicin which went without a hitch,  Mia coloured her way through the treatment and entertained staff and other parents with her antics and chatter.  The real blow came when we realised that the steroids had to commence again on Thursday morning (we had just had 2 good nights of sleep). 

So it’s Friday now and the steroids have definately kicked in again, Mia is moody, temperamental, restless and hungry (so am I :-) ) We were up for breakfast at 5am and again at 7am!  She is however still well which is fantastic news depite her pretty poor blood results, she has very low neutophils of 0.2 and low platlets of 40.  And she still smiles hundreds of times in a day so we will keep plodding on and smile with her!  XXX Thank you so much for all your comments, keep them coming we love to read them XXX 

9 Responses to “Intensive!!!”

  1. Jo and Rebecca Says:

    It was lovely to see Mia at nursery today. Rebecca was very excited to see her too now shes a big girl and in the pre-school room ! Today is the first time I’ve managed to read your website and forgive me I know its corney but the way the whole family seems to be coping is truly inspirational. We wish you all the best for the future and send you lots of love. xxx

  2. Grandma Says:

    I don’t know if there is a “Love” limit and if there is, how to measure it, but I have definitely gone over it this time! You are all doing so well in the really tough bits, all of you coping with what is none of your doing. There are not enough superlative words to describe how wonderful you are, just hang in there!!!

    Grandma XXXXXXXX

  3. Mark Edgson Says:

    Hi Mia,

    I’m Lewis’s dad…http://www.lewisedgson.blogspot.com/

    I don’t know what your mums saying about you, I’m sure you’re really nice all the time. We spent the afternoon on the bed next to you last Wednesday (not the same bed but the next one). You’re a bundle of fun; if mums had enough we will take you home next time.

    I said I was going to have marmite sandwich when I got home and I did so I wasn’t joking.

    Hope you keep well and we see you again soon.

    Mark, Keeley and Lewis

  4. Tracy Says:

    Hi-jinx at the Panto! Well you know that I have a sneaky suspicion Mia, that you would like to tread the boards yourself, so this is probably an early attempt to upstage! Panto’s can be a bit of an acquired taste – I remember feeling genuinely scared and not at all amused when a rather chubby Peter Pan was ‘flying’ above my head – so I am with you on this one Mia.
    See you soon, T and Tad and Simon

  5. Lea White Says:

    Hello!

    Thanks for stopping by. Thanks also for watching Bianca’s YouTube videos. The one of her anniversary really was a summary of our first year of treatment and not necessarily in chronological order. Please don’t let it stress you out too much, our intensive part was filled with lots of infections and hospital stays (we’ve stayed around 113 days in total so far with various infections), but it certainly does not go like that for everybody. Soon you guys will reach maintenance and that should become more of a settled routine. Yes, the steroids remain awful, but it’s only 5 days a month which is certainly better than the previous phases.

    I hope her neutrophils and platelets come up soon, it’s not fun when they are neutropenic.

    I love the photo – she is absolutely gorgeous!!!

  6. Stuart Hopkins Says:

    well mia I can totally understand your actions,your a radio star,been in the paper and have your picture online with your own website met famos people and yove picked up a lucky star award.none of those actors in the panto have got that much experiance,you have nearly done it all.im surprised that they didn’t ask you on stage but by the sounds of it you made your voice heard but maybe next time you wait until the end of the panto to tell them what’s what.
    Big hugs
    Stu x

  7. Anne Martin Says:

    Hi Mia

    Hope this weekend was happier for you all than last weekend, that grumpy steroid medicine really messes with you and makes you upset, but as you explained to me last weekend after a nasty bout of hunger and frustration “I have to have it Nana cos it helps to get rid of the nasty leukemia” so brave. We loved having you to stay, and Harvey how well behaved were you, a star no less.

    Mummy and Daddy must be under so much stress and worry no wonder sometimes they have cross words, I experienced the wake ups in the night with you on Saturday and bless you were screaming with pain in your little legs (apparently Mummy says it may be muscle spasm due to the steroids which also makes your little legs a bit wobbly), I am then amazed at how quickly you recovered and wanted buttery toast, cheesey pasta (sorry i had the wrong cheese), then porridge with syrup-well done Mummy for her patience.

    I hear you went car booting with Daddy on Saturday did you find any good bargains??? and how did the photo shoot with the quad bike on the beach go?? you get to do some really cool things.

    No hospital this week so hopefully you will saty well and enjoy a relatively normal week with playgroup visits.

    Lots of love
    Nana
    X

  8. Tessa & Harry Says:

    thinking of you all….lots of love Tessa & Harry xxxxxxxx

  9. Brad Says:

    Hi Intensive!!! was very well written. Good job.

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