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Are you or your loved one experiencing GvHD and want to talk about it? Come and join us in Manchester on 15 November 2019.

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Hello

Hi all, my 20 month old daughter was diagnosed a year ago with Alk+ ALCL. She relapsed after three cycles of the ALCL 99 protocol and was put on an experimental treatment until her bmt. She is now on day +63. She is doing ok with some ups and downs. Some temperatures prompted the doctors to do an MRI and bone marrow aspirate to rule out relapse and so far all is clear. She also has 100% chimerism. As parents we are doing all we can to keep her happy and safe but I worry all the time.

Comments

  • Hello Julemy

    It's heartbreaking to hear what you and your family has been through, I am not a parent but I was a patient and I have elderly parents who I know found and still find it very hard to cope with my diagnosis of AML and subsequent transplant. I can't begin to imagine how tough it must be to stand by as your child endures the treatment, illness etc.

    As a patient two years post transplant, I can confirm it's a very bumpy road to recovery, with lots of bugs and they tend to hit you harder post transplant. Even now I find colds linger and the fear is always there that the temperature etc. might be a return of the original condition. It sounds to me as if you being loving parents and suffering the price of that, worrying for her is normal. Only time helps to lessen that anxiety. I know some hospitals offer family support / counselling, it might be worth looking into via you CNS or the consultant and /or groups which offer parental support on how to manage you worries.

    The positive is that your daughter is 100% which is a good thing, Day +63 might be a little early for chronic GvHD depending on her immunosuppressant regime. However, if she does get some form of GvHD that is also a positive with each day the chances of relapse reduce.

    Rachel
  • Hi there and welcome to the forum.

    I can't imagine what it must be like to watch a child so young go through this type of treatment but it sounds like she's doing well and 100% chimerism sounds like a good sign that the graft is doing well.

    For all of us there are ups and downs throughout the post transplant period and minor infections can upset the balance and knock blood counts. In one so young imagine her immune system had little chance to establish itself before her illness and I guess it will be difficult to judge what is associated with her transplant and what might be a normal part of infancy.

    It must be a very worrying time for you and I'm not surprised that you are anxious. There are plenty of other parents here with children of differing ages so hopefully they will be able to help with some advice on how to help your daughter get through this. I was 46 when I had my transplant so nothing like the same, so I imagine it's quite bewildering for your daughter and extremely stressful for you as parents.

    However we can help you we are here to support you so please let us know how your daughter is getting on and ask for support as you need it. The Anthony Nolan team are fantastic and will have more experience of childrens transplants than many of us, so don't be afraid to ask for support if you need it.

    Very best wishes to you and your little one.

    Steve
  • Thank you both, also for answering on the other discussion thread. We are beyond anxious, just today worrying about some skin rash which probably is just eczema. I do hope this will get better over time. The bmt process seemed very structured and in a way side effects were expected and dealt with whereas now it’s the complete unknown and there is plenty of uncertainty. Rachel they’ve taken her off completely from the ciclosporine to induce some gvhd. This was two weeks ago. So far we haven’t seen any.

    Thanks, Julia
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