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Graft versus host/ bereavement

Hi everyone, my daughter passed away on Hogmanay after a successful bone marrow transplant. She developed stage 4 graft versus host with bleeding, in the eyes, intestines, skin and other organs. I am wondering if anyone’s child or loved one has been through similar( I hope not) but if you have it would good to talk to someone who has been through a similar experience, because we were in isolation it was only me, my daughter and the nurses who saw what she went through.. I have no one to talk to who knows what my daughter went through. She was 7 1/2 when she passed, thankfully she is no longer scared or no longer in any pain.

Robyn x

Comments

  • Hi Robyn, I’m one of the community champions on the forum and a transplant patient myself.

    First of all can I offer my deepest condolences for your loss. I really can’t imagine how hard this must be for you. As an older patient my experience is clearly different but I know a couple who lost their daughter through similar circumstances just before her 6th birthday.

    I’ve seen how devastated they were and whilst the time has passed the pain is still there. Like your daughter she’d had an apparently successful transplant but it was complications with GvHD that she sadly couldn’t get over.

    I know from their experience there is nothing anybody can say that will ever give you any comfort or answer the questions you have no doubt asked as to why it was you, and your daughter.

    I’m not sure if there are others on the forum who have been in the same situation, but my friends experience shows that sadly you are not alone. I’m sure it’s a very difficult subject to discuss openly on the forum, but I would urge anyone out there that might be able to help to consider contacting you via a private message if they prefer as I’m sure being able to speak to each other directly may help both parties.

    Thank you for raising this very sad but important subject and I hope you find the support you need.

    Best wishes,

    Steve

  • Hi Robyn,

    It was good to talk to you last week and I hope you found talking to our lead nurse Hayley helpful. If you would like to chat again at anytime, please give us a call.

    If anyone would like to talk about this or any other post on the forum, don't forget you can call us on 0303 303 0303 or email patientinfo@anthonynolan.org.

    Best wishes,

    Caroline

    Dieseldrinker62
  • I haven’t experienced what you have but felt compelled to reach out to you . My son has AML had BMT Dec 16 but has relapsed three times I know how isolating soul destroying and scary supporting someone can be . My thoughts are with you and I can only imagine the pain you’ve been through my sons recent relapse news was only this wed. So I send you love for what it is from one mum to another bless you x

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