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My eldest daughter has aml



  • Morning all.my girl is finally home.The virus in her bladder has cleared up .Thanfully.She cried with releif when she got home.Not sure what the next steps are.They have just performed a biopsy so hopefully we will know a bit more soon..

  • Hi Adelaie. Michelleanne, Auds, dave steve,

    Sorry, can't read at the moment, eye gvhd.

    You're all with me thank you. They've put me back on myfortic.

    Love to all,


  • Hi all,

    I am the same vision very very blurry. Can hardly read. Occasional gritty bits in eye, luckily not too dry or painful. More blurry than anything. Otherwise not really any progress. Glad your daughter is home and hope she will strive onwards and upwards.

  • edited February 20

    Hi Adelaie,

    Great news that your daughter is home which I'm sure is a relief to you all. I'm sure being at home rather than in hospital will help her feel better and she can hopefully focus on recovery now.

    I hope the biopsy doesn't show up anything too dramatic and that her bladder is now OK.

    All the best,


  • Morning everyone finally some good news .my daughters consultant rang yesterday to say my daughters biopsy results show she is free of leukemia... i.know shes by no.means outnof the woods as waiting for her bloods to go up and see if the transplant is a success... but its hope.......

  • That is excellent news. I hope she continues to improve.

  • Great news Adelaie. Your daughters journey sounds very similar to mine.

    my daughter was so weak by the time she hit home after 5 months in hospital. She has been back in hospital twice with infections but is making good progress at the moment. I would like her to put on a bit of weight as she’s terribly thin but hopefully that will come in time .

    Im so pleased for your daughter and yourself .


  • Hello all, hello Adelaie,

    Wonderful news, free from leukaemia, really lifted me to read it.

    Yes, Dave, me too, things aee blurry but pain is controlled, Myfortic back doing its work, keeping me awake but thankfully keeping the gvhd at bay it seems.

    Hopefully your daughter can get a bit of stability going for a while Adelaie, I wish it for her.

    Best wishes to all,


  • Hi Helen and Dave . I’m very sorry that you are both having such problems with your eyes . Try to stay strong . I’m sure that your medical team will do everything possible to help you and I really hope that things improve soon.

    Think about you a lot.

    Audrey xx

  • Hello Audrey, Steve, Dave, Adelaie, Michelleanne,

    Just a quick catch up. Thank you for being there. You strengthen me.

    I'm off to the clinic tomorrow for my ecp. For my eyes I now have ciclosporin and steroid eye drops. They removed the bandaid/bandsge/protective lenses. When the pain was acute I was prescribed morphine but thankfully it didn't work so well for me and made me jittery, I was worried about addiction. I'm on paracetamol now which works well. Vision is blurry, spend most of the time with my eyes closed listening to very good podcasts from bbc radio 4. The myfortic is taking it's time to work. It's a bit up and down still, ankles sclerosis seems worse, mouth too. More meds. I could open a chemists.

    Best wishes to you all, you heroes,


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