Haemoglobin down to 79 time for Trampolining!!!

Mia is now in week 23 of treatment and the final week of this first intensification.  She had her Lumbar Puncture with intra-thecal chemotherapy yesterday and commenced on another 4 days of IV cytarabin.  It was a very long day that started with our 6.30am ferry being cancelled (bad weather), we endured a 3 hour wait for pharmacy to dispense Mia’s chemotherapy medicines to the ward and we didn’t get home until after 6pm!  I was exhausted but Mia was still ready to put up a small fight at bedtime!  It was only small though because she had been good the night before and earned the reward of bedtime stories again (they had been banned for the previous 2 nights for not settling without tantrums… That makes me sound cruel!  I do give her fair warnings I promise).  So by 8pm Mia was settled and she slept till 8am so she clearly needed a good sleep and her energy levels today have been great despite a low haemoglobin of 79.  She will need a blood transfusion if they drop by much more but it is also dependant on how she is coping with it.  The haemogobin carries oxygen in the blood so signs of fatigue, low energy, increased respirations, and tiredness would indicate that she is not coping….None of these so far, in fact quite the oposite Mia has been on the trampoline today for the first time since about November.  When she did last have a go she managed only a few jumps, today she bonced for a good 5 minutes and even attempted a seat drop!  I have tried to upload the mini movie but have failed.. if I manage to get it on youtube I will post the link.  As a  result of the anaemia (low Haemoglobin) She does look very pale, “Princess Casper” (friendly ghost) was the nickname of the day, to which Mia replied “Is Casper a boy?” with raised eyebrows as if to say “I don’t think you can call ME that”.  It seems strange that Mia is so obviously anaemic at the moment and yet when she was diagnosed with Leukaemia her Haemoglobin was much the same as it is now and we hadn’t been that aware of how pale she was.  It is possible that it was so gradual and that because there were no other obvious signs that pointed to her being very unwell we did not notice it.  I still often think back and wonder how long before her diagnosis the Leukaemia was taking over her little body,  I am not angry that we didn’t know sooner and I don’t feel responsible for not spotting any earlier signs if they were there, we did spot the signs (not that we knew what they meant at the time) and Mia was diagnosed promptly, I’m just sad that it happened at all!   I do not dwell on this for long though because meanwhile although her life has changed dramatically Mia embraces everything that she does with the exception of bedtime (lol), like trampolining on a freezing cold February day with a ballerina dress on.  Mia also accepts the need for every hospital visit and every treatment including almost daily medicines (some of which taste horrid), she understands that it is necessary to fight the Leukaemia and make the baddies in her blood stay away… So that’s that! ;-)   We take our lead from our beautiful 3 year old who takes it in her stride. 

I have tried and failed to add the movie of Mia on the trampoline so you can have a picture of her watching said movie on the laptop instead!

Plan for the week ahead… Hopefully Mia will be well enough for nursery in the morning then I will take her bloods and we will take them up to St Mary’s at lunchtime where we may have to stay for the afternoon if she needs a transfusion.  Mia is also neutropenic again this week so there is a risk of opportunist infections… I will keep you all updated, Thanks for visiting XXXXXX

PS. Mia has been watching a Peppa Pig episode which featured a rather large spider which has resulted in a bit of arachnophobia today… hopefully this will be short lived XX

4 Responses to “Haemoglobin down to 79 time for Trampolining!!!”

  1. Gin King Says:

    I regularly visit the web site to see how you all are getting on, and just wanted to say you are all amazing with how you are coping (espicially Mia of course!!)
    You are an inspiration to us all
    Michelle- can’t believe its so long since our Tiger days!!!

  2. Sarah Gray Says:

    You all sound like you’re doing fantastically (as always!!)

    Daisy and Emily know the spider episode too Mia, and I spent about half an hour the other night convincing Daisy that the spider was not hiding in her bed – while Emily was telling her it was!!!

    Have a fab weekend!!

    Lots of love,
    Sarah x

  3. Anne Martin Says:

    Hi Girlies

    What a rough old day you had to go through on Tuesday no wonder you are both exhausted by bedtime!!!!

    It’s very good to hear that Mia still has the energy to have a go on the trampoline even if it was cut short by the thought of spiders-I couldn’t get to the link to see the pictures or video??? will have another go later maybe there is a problem. Hope the visit to St Mary’s went okay today, will speak with you later this evening for a catch up I’ve got everything crossed that Mia doesn’t pick up any nasty infections and can get through this next stretch without any hospital stays.

    Lots of higs and kisses for Mia and Harv

    Love you all loads
    Mum
    X

  4. Stuart Hopkins Says:

    Hello mia,well ihope your getting your bed time storys the last few days becouse you’ve been good.i feel I don’t have to ask if you’ve beengood at hospital I just know you have but has your mum, he he. Is see from the last pics that you all had a great day there with the xray machine .
    Couldn’t do the link so I’ll see your smiley pictures later on.
    Make sure your well wraped so you don’t get any horrid bugs.
    Big hugs stu x

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