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Hi, I have posted a question before to ask if there was anyone on this site who had AML 20-30 range but didn't get any responses however...
my son is now being admitted for transplant and I just wanted to ask for any advice and experiences from those of you that know how you have managed this part of the journey
have to say we are petrified, just had the clerking appointment yesterday for Danny to sign the consent and it just took us back to the first transplant appointment which we felt was so negative and upsetting
thank you


  • Hi Julie, thankyou for your quick response - did your son have AML and ALL, bit confused sorry? and did he have radiation as well as chaemo? did he have any mutation? glad he is doing so well. have to ask how the **** did you get through it, and moreso coming up to the transplant, after yesterday's appointment we just feel so battered down again. Did your son have reduced or full intensity regime for the transplant? Was he ill, did he have to go into intensive care? sorry about all the questions thank youx
  • Hi Susie
    I just wanted to pop in and say that if there is anything you'd like to have a chat about you are welcome to call the Patient Experience Team on 0303 303 0303. We'd love to grow our parent audience on the forum but as it's still quite new I'm sorry you haven't had a quicker response. It sounds like to you have lots of questions and I'd be happy to help.
  • Hi Susie,

    I had ALL originally when I was 23, and relapsed at 31, prior to having a transplant last year – so I have some idea of what your son is going through, and I know for my family it was often a terrifying experience.

    Everyone is different, but I found it helpful to take things a day at a time, and remember that although there would be days that were more difficult, there would be better days, too, and that the transplant was ultimately a fantastic, positive opportunity for life that the leukaemia might otherwise not have allowed me!

    Answering the questions you asked Julie, in my treatment experience I've had cranial radiotherapy, but that was the first time around, and this time the doctors were not keen to repeat it. That and some potential concern about a raised risk to my liver led me to having reduced intensity conditioning pre-transplant. I've had my "ill" moments, and felt pretty grotty either side of the transplant, but have been building strength and my immune system since then (almost 18 months ago) and life is wonderful!

    I found that having my wife with me was hugely comforting, and she understood that a lot of the time when I was under the weather I just wanted her to be there and wasn't feeling like conversation etc. I'm sure your son will be hugely appreciative of your support in the same way. I found 'passive' entertainment such as listening to music quite helpful, but was often happy without any distractions. I tried to make sure I got up and out of bed every day, For the transplant day (Day Zero), my wife and father brought in party hats, balloons and sparkling cordial to make it a party – which definitely helped me consider the event an exciting occasion to celebrate life!

    All the best to you and your son. Do talk to Chiara and the patient experience team, who are quite simply fabulous – and do keep posting on here with any questions: everyone's experience is different, but there's a lot of experience and compassion here, and even if you don't get a quick response, there's usually someone who's faced a similar issue etc.

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