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My son Henry is heading over for bone marrow transplant soon

Hey... hope any one reading this is safe and well.

My son Henry, who is 21 months old, was diagnosed with JMML and NF1 late last year and we are heading over for his bone marrow transplant on 19th April in Bristol. There has been so much to take in lately as we have more and more phone calls about what the symptons and side effects are for all of the drugs he will be given. Also, how the isolation ward works and what we are to expect in regards to living out there and being parents to our son.

I guess we are getting our heads round all the information at the moment, and it's so overwhelming and yeah, pretty terrifying. We know we need to keep our focus and be our best so Henry gets the best care and support possible... but any tips and advice in general for being on the isolation ward would be appreciated as at the moment we don't know how it'll look.

Henry has thankfully been doing well on the run up to this treatment, and he is too young to remember all of this, but we will remember it. His strength gives us strength as he is a proper fighter through everything so far!

Thanks in advance



  • Hi Julie,

    Thanks so much for posting on the forum, I am the lead nurse in the patient services team.

    I can only imagine how daunting it must be as a parent when you have a child having a stem cell transplant, the information that you are given can feel overwhelming and your apprehension is completely understandable. As you have said, isolation for Henry will go unnoticed so its important that you are prepared.

    When you arrive on the ward a nurse will show you around the unit and to your room and although rooms vary from hospital to hospital it should have enough for you to stay comfortably with Henry. Often on children units there will be a communal kitchen area to make hot drinks and maybe even heat meals. Although Henry cannot leave the room you will be able to and its important to do that when you can, there is often a family or parent room that you can go to and have some time out. You can also meet other parents, finding support from other parents going through similar experiences can be really helpful.
    You might also try and get out and go for walks when you can too. At times it will be tough so when nurses or others offer to help to give you a break take the opportunity, I know you will want to do everything for your son but you have to keep yourself well and not too tired for when Henry goes home.

    From a practical perspective take in the obvious things like books etc but also take in things that will keep you connected like a laptop as there will be WiFi access. You should have been in touch with the transplant co-coordinators Penny or Chris who will also be able to provide support and information during and after the transplant, I would recommend having a chat with them before going in especially if you have specific questions about what you can expect.

    The most important thing to remember is that as parents you get support too, you will be devoted to Henry but looking after yourself is essential.

    Wishing Henry well and please keep in touch with his progress and if you have any other questions.

    Best wishes

  • Hi Julie,

    It's hard to imagine one so young going through a transplant. As you say it's probably unlikely that Henry will remember much about it all in years to come, or understand what is happening at the moment, so I guess the main strain is on you as parents. So as Hayley has highlighted you mustn't forget about your own well being. I've no doubt watching Henry go through this process must be really tough so you must make sure you have support around you to help you through this.

    It's great that you are able to stay with Henry whilst he is in hospital and as Hayley has said you will have some freedom to get out and about for a break and you should certainly do so when you get the chance. Unfortunately Henry will have to stay in his room on the unit but I'm sure his isolation will be made easier for him by you being around.

    I'm not sure how a transplant affects younger patients, but I know as an older patient I spent a lot of time sleeping as the process made me feel so weary. When he's active I'm sure a few of his favourite toys will keep him busy and there will no doubt be a TV in his room for him and you to watch childrens TV programmes and films together. When he's sleeping, the TV will no doubt help pass the time for you and a laptop or tablet is a good idea to hook up to the WiFi and keep in touch with people. I'm sure you will have family and friends wanting to know how he is getting on, so online communication is a godsend to keep them updated regularly.

    Please keep us updated with Henry's progress and let us know how you cope yourselves as parents caring for him during his transplant as I'm sure it will help others in the future.

    All the best to you and Henry.


  • Hope your little fellow is doing well after his transplant and you are coping with hospital life. All the best.

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