Friday, April 17, 2009

Day +64


Day +64
Hi All, unfortunately I had another horrendous night, at one stage I was up every 15 mins. I am absolutely exhausted today and really puffy from all the fluids I am getting. . I didn’t really feel like eating at all today but I tried to eat some brown bread and soup. I had my shower which was very painful on my rash L. Mummy and Daddy are both staying here so they can take turns at getting a rest at night. Today my blood counts are not good again, I’m having another platelet and a blood transfusion today. The doc came this morning and measured my belly which is 74 centimetres because of the fluids I am getting I’m getting rid of quickly enough. I also had really bad pains last night so the doc said I can have a container around my neck with a button on it which has morphine in it and when I get a pain I can press and it will give me some relief. I don’t want it and said that I would have think about it, I really don’t want it cos it will make me sleepy for now I think I would rather the pain! My blood pressure has been going very low too and I have to get it taken now in both arms and sometimes my legs!! On top of everything I am also getting a high temperature during the day and night, nothing seems to be going right now!! I’m still managing to watch friends everyday though. Amanda has been sick this week so no play nurse :-(. Paula is back tomorrow though and is in on Sunday too so looking forward to that. School starts again on Monday but not sure if I’d able for it, we’ll see. Right now we are waiting for the stem cells to do their stuff and make my gut better so fingers and everything else crossed! Thanks for all your comments. Lots of Love Naoise xxx P.S: Mary did the bump come out yet?? Xxx Oh and thanks for the letter Emma it is on my wall!! xxx
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16 comments:

  1. Sophie and Isabelle BurkeApril 17, 2009 at 12:02 PM

    Hi Naoise

    Oh well you must just be fed up by now and rightly so, I (Isabelle) would give one nights sleep if it meant you could have a good nights sleep. Today sophie went to the zoo with her friend and she is still not home. I got to go to my nana's for chips and we met the murphys there. I am trying to teach myself Galway girl on the violin, but its not going that well. Yeaterday it rained all day so we came home at 3 o clock and put on our pj's and watched Mama Mia. Do you like this movie? Well better go Ella is bullying Euan and my mam has asked me to go and break it up.
    Hope you have a better night.
    Love
    Isabelle
    xoxoxoxoxoxoxoxox

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  2. ChrissieApril 17, 2009 at 12:10 PM

    Hi Naoise,
    I am so sorry honey that you are having such a time tough time. Its just so unfair. You really deserve a break. Im so sorry that your still not getting any sleep. I really hope all thoes stem cells to their thing and fast.

    I am constantly thinking about you and i have been saying loads of prayers for you. I will keep everything crossed that the stem cells start to work very soon. Your so good for updating the blog even when your not feeling well.

    Thats good that Paula the play nurse is back on Sunday. Take care Naoise. Miss you.
    Lots of love,
    Aunty Chrissie x x x

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  3. PaulApril 17, 2009 at 12:53 PM

    Hi Naoise,
    I'm so sorry that your having such a hard time of it at the moment and you are so brave for putting up with the pain rather than taking the morphine. Hopefully your cell stems will kick in and starting doing there job. We are all hoping and praying for you here. I'm not sure if you remember my neice rachael but she has been trying to send you an email, not sure if you got. Everybody has been checking your blog. I have a friend who's nephew has been in newcastle for tests and is waiting for a transplant and will hopefully be over there soon.
    I hope you get some sleep tonight and feel better tomorrow.
    Take care Nin.
    Paul

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  4. AudreyApril 17, 2009 at 2:17 PM

    Hi Naoise honey,
    I am so sorry that you had another tough night and that you are still feeling so sick. I have everything crossed that the stem cells start working and make your gut much better. You really are very brave about not taking the morphine but maybe if it eases the pain it might help. I hope you get some sleep tonight.
    Lots of love,
    Aunty Audy

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  5. @ilbhe xxxApril 17, 2009 at 2:22 PM

    Hey Naoise, I,m also really sad that you are still not feeling better. I hope that you get some sleep soon as I am sure you must be wrecked. I will keep evertthing crossed and wiah really hard that things get better for you xxxxxxxxxxxxx love from all the Murphys

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  6. Wicklow McGrath'sApril 17, 2009 at 2:28 PM

    Hi Naoise

    I read your blog earlier this evening and I was so sad to hear things have not gotten better YET. I say "yet" because I know you are such a brave, positive & determined girl that this will all come good - I just want it to happen soon as I know you do to.

    At first I couldn't type on your blog because I felt so sad when I read it, but then I shook that off and said to myself if Naoise McGrath can blog to me then the least I can do is blog back! So even with miles & miles between us, you put me rightly & properly in my place!

    I was on a course today in town which was nice, even a bit relaxing. Though when I got home I was starving and I had a Naoise type higgedly piggedly dinner!! I had half a packet of chocolate biscuits followed by a tuna & sweetcorn quesadilla that Sadhbh & Paula taught me how to make. It was delicious but I ate too much & in the wrong order coz I was starving and now my tummy is not feeling the best for it!

    My sister asked me to send you on the following link....if you get a little bit of Internet time you can click on these horses (or your Mum & Dad might do it for you) & their singing is sure to make you smile.
    The link is: http://www.clickpix.de/horses.htm

    I hope you have a better night to make up for today and that all the pains go away as those great stem cells do their thing. We are thinking about you ALL the time.

    Sleep tight Naoise
    Lots of Love
    Aisling

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  7. Wicklow McGrath'sApril 17, 2009 at 2:32 PM

    Hi Naoise
    I'm sorry you are not feeling well. We changed the tadpoles water and fed them today. I had to scoop them out with a spoon. It took ages and getting the frozen lettuce out of the ice tray nearly took as long.
    Just so you know my Mum ate lots more biscuits than that. I nearly droped a tadpole earlier but I didnt. Next time I change the water I'll be prepared for the challenge :-]
    Hope tonight is better is for you.
    Good Luck
    Jack

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  8. PaulaApril 17, 2009 at 2:46 PM

    Hi Honey,
    We all have our fingers and toes crossed too that those stem cells do their thing, hopefully very very soon. You have so much going on already without the pains, you so deserve a break. Thank God for Friends, eh!

    We went to visit Aunty Audy today, she has only a few days left until the new baby is born. Kiel and Oisin had lots of fun playing with tiny soldiers, tanks and helicopters. Boys are quite mad!

    I hope you get some sleep tonight and while you are sleeping peacefully some of those 60 million stem cells sort out your gut. I'm so proud to be call you my niece, you are the bravest person I know.
    Lots of love, Paula

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  9. Patricia and NiallApril 17, 2009 at 4:15 PM

    Just saying good-night, Naoise, we are so sorry last night was such a bad night,and we are praying tonight will be better and your army of stem cells will be busy doing their job. Love & hugs,Patricia & Niall

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  10. maggieApril 18, 2009 at 12:02 AM

    hi Naoise sorry to hear your still not sleeping Hope last night you managed to get some sleep!
    U must be feeling so exhausted - maybe the morphine might help - if it takes away the pain u may be able to sleep better! I had a morphine drip when i had seadna it was great fun the nurses kept pressing it when they passed me & I got very dopey!! (my friends say i'm like that at the best of times ;-) haha)
    Hope the stem cells have started doing their job at least once they kick in u should start to feel lots better!
    Your being such a brave young lady - everyone is so proud of u!
    Take care luv maggie & seadna xxx

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  11. gaga byrneApril 18, 2009 at 2:02 AM

    Hi Naoise,
    I am so sad you are not feeling to good,i really hope the stem army starts fighting soon and you start to get better.The elephant,snakes and monkeys were in the bar last night(not for a pint)only for photos.It is getting like a zoo.Did you learn any Dutch words.Sabadee Mai means how are you in Thai.Will try ring you tonite now 4.00pm here.Hope you are sleeping now.Lots of love GaGa xoxoxo

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  12. UnknownApril 18, 2009 at 6:53 AM

    Hi Naoise,
    Very sorry to hear you are having such a hard time at the moment. We hope the stem cells start doing their work very soon. We are thinking about you every day. Hopefully that rash eases down soon. It must make showering very unpleasant for you alright. Luke (3) has empetigo at the moment and has a spotty face. Its contageous but he has an antibiotic gel to use. He won't be contageous by Monday. Greg (8) makes his communion next Saturday and we are hoping he and the rest of us don't catch it. We would all be lovely in the photos (a spotty bunch)! No close ups please!! Naoise, we are all rooting for you and hoping you feel the benefit of the stem cells very very soon. You are an amazing little girl. We will keep reading your blog.

    Bye for now,
    Heaps and heaps of love
    Margaret Vincent Ross Greg and Luke
    xx xx xx xx xx xx xx xx xx xx xx xx

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  13. rachaelApril 18, 2009 at 11:01 AM

    hi naoise

    thats so unfair about all thats going on.
    I hope that you are getting better by the day.

    I'm glad that you liked emma's letter i hope it cheered you up.

    lots of luck rachael

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  14. ColleenApril 19, 2009 at 3:06 AM

    hi naoise it is a shame that all of this is happening good luck naoise
    colleen
    xxxxxxxxxxx

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  15. hannahApril 19, 2009 at 4:08 AM

    Naoise,
    i just got back from spain on wed,and have just read nearly your whole blog from day -1 (and FYI it takes a realy long time)!!! its amazing the changes that have happened

    im glad you enjoyed our DVD,it was so fun to make.your auntie and uncle are really nice,and i hope you had a gr8 Easter!!!

    lots o love , hannah

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  16. CarolApril 19, 2009 at 8:45 AM

    Hi Naoise, we are reading this in Sevilla in Spain. We are thinking of you all the time. We hope you get some sleep tonight and that you feel a little better tomorrow. say hi to your dad and mam from us.
    miss you loads, Joy, Cillian and Carol
    Lots of kisses xxxxxxxxxxxxxxxxxxxxxxxxxxxx
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

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