Delayed intensification number 2 one week in….

We are actually a little over one week into this block of treatment but the heavy steroid doses of last week have left me very little time to catch up on Mia’s diary!  So…. Tuesday 5Th May was a long one!  Mia had her lumbar puncture at around 10.30, she was brilliant at waiting despite being awake from 6am and not being able to eat or drink, she really doesn’t get that bothered about being starved she just knows that if she went to sleep with a really full tummy she might be sick and that wouldn’t feel very nice.  After her anaesthetic and recovery (laying still for 1 hour to prevent headaches) Mia and I headed to the cafe to get a cheese and ham Mezzaluna (toasted flat bread) and then returned to the ward for her next 2 chemotherapy drugs.  Unfortunately due to the bank holiday weekend the pharmacy department were back logged and we had to wait around till 3pm to get her vincristine and Doxorubicin, it was a long and tiring wait but gave us a nice chance to catch up with other children and families who we have met along the way and who were also enduring the long wait for their chemotherapy.  Gradually one by one all the children were either hooked up to their “Robby robot’s” or given their vincristine (or both) and we all headed off for home, Mia and I managed to catch the 5pm ferry so we were home by 6.30pm and she was tucked up in bed within the hour.  On Wednesday Mia spent the morning in nursery and then in the afternoon we went scooting along the seafront with Henry and Bella.  We covered a distance of at least a mile and half before it all became to much for Mia who literally seized up in front of us and she could barely stand let alone walk.  I Had to carry her the last 1/2 mile home and felt very guilty for forgetting quite how week the chemotherapy makes her.  That was the last real walking Mia as done!  She has been managing up to 2 hours in nursery but only every other day and she has been totally exhausted as well as grumpy and hungry thanks to the dexamethasone.  On Friday we went to St Marys for Mia’s last dose of Asparaginase (IM injection in thigh) and Mia was very brave, she had been dreading it since Tuesday!  She got a prize from me and one from “Mad Helen” the nurse which helped he to forget it.  She has done remarkably well with only a few big tantrums this week, although she has needed lots of carries and wants to be my shadow again at all times, mainly she has just been very tired and if she gets enough rest she seems to cope better with the low mood broguht on by all the drugs ahe has had.  On Wednesday this week we returned to Southampton for her second doses of Vincristine and Doxorubicin, so far her blood results are still good and she is staying well.  With the Dexamethasone stopped for one week Mia is a lot brighter and managed a full morning in nursery yesterday, however the sleep disruptions have been huge, iniialy it started with waking for food (last Saturday) and then last night she was just wide awake between 12 and 3am telling me that she was not going to go back to sleep!  She didn’t ask for food and I managed to get her to stay in her bed (don’t know how!), I crept back to be and cat napped in between visits to her room each time she called out to ak me the time, or to line up the bears, give her a drink blah blah blah… I can only hope that tonight is more settled.   Thanks for checking in XXXXX 

8 Responses to “Delayed intensification number 2 one week in….”

  1. sev and ryan Says:

    Hi Michelle , Ryan and I have just been reading the last up date , he is very touched by it .He told me” Michelle must be very tired at the moment .”
    We are thinking of you all ,it makes me realise that I really shouldn`t complain so much about that stupid weather for exemple and just get on with things
    Lots of love ,
    Sev and Ryan

  2. Grandma Says:

    Hello,

    Checked in, checked up, double bravery and fortitude awards, lots of love,

    Grandma. XXXXXXXX

    Checked out

  3. Hayley Says:

    Well done Mia, sending lots of love and positive prayers your way. xxxx

  4. Anne Martin Says:

    Hi Mia it’s Nana checking in for an update-I spoke with your Mummy at the weekend and she told me you were being very very brave-I will be thinking of you every day – try and get lots of rest at night so you will be fit to go scooting again very quickly-Harvey will be missing having you to race against-love you lots XXXXX

  5. Sarah Gray Says:

    Wow Michelle, it seems that you and Mia are true stars, and seem to take everything in your stride! The girls are sick at the mo, and not sleeping, but I can’t imagine what it’s like for you 24/7. Lots of love to you all.
    Sarah xx

  6. Auntie Gemma Says:

    Big Up’s and Big Love! xxxxx

  7. Amy Says:

    Hi all, hope you are getting some much deserved sleep. I miss not seeing you now I am constantly working. Would be great to catch up sometime soon. As alway’s you continue to cope in the most commendable awe inspiring way,you are without a doubt THE most amazing lady I know. Love ya!xxxx

  8. Kim Read Says:

    Hi Michele and Mia, Have been catching up on you. You really are sooooooo brave Mia. I love reading all your news and seeing photos of you with your family and friends. I soooooo love the mini video of you on Ryde seafront riding your mini scooter, cool.You have a cheeky laugh. I saw Sam on the ward today as she helped me out alot with one our boys from Beaulieu. Time for a bath and bed after a busy day at work. Keep smiling. Lots of love Kim xxxx

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