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Looking for any support
Hi, my 14 year old son, Seb was diagnosed with Severe Aplastic Anaemia this Feb and requires a bone marrow transplant. We are all overwhelmed and feel quite isolated, are there any other people out there of his age who have been/going through this?
Answers
I know we have a few members on the forum who have children of various ages that have gone through transplants. They may have had these for different reasons to Seb but I expect the procedure will be much the same in terms of the transplant process and I don't think there is much difference in the process between children, teenagers and adults. I would imagine though that the time in hospital for a lad his age is a big shock to the system though and that will be the main challenge.
Do you have an indication of timescale for the transplant and what treatment is he having at the moment?
Hopefully there will be other parents who can come along and offer some advice and support.
Best wishes.
Steve
I am the nurse specialist in patient services. I am sorry that you have received such devastating news this must be a difficult time for you and your family. Its good that you are looking for support and I am sure you will find that on this forum.
The paediatric and transplant team that will be treating Seb should be able to advise on practical and emotional support available at the hospital and locally and Seb should have a nurse keyworker who can help guide you through this. You can also contact Clic Sargent who can provide extra support and advice, sometimes they are based in the hospital or you can contact them via the website http://www.clicsargent.org.uk/together?gclid=CPCf_MC4xNMCFbMy0wodxWIEHQ
There is also the Aplastic Anaemia Trust that are very good and have patient case studies on their website that include patients that have had a transplants http://www.theaat.org.uk/
Like Steve has said, even if the diagnosis is different you can still learn from others that have had a stem cell transplant as experiences might be similar. Our booklet for parents who have children going through a transplant is available here and includes a patient with severe aplastic anaemia.
https://www.anthonynolan.org/sites/default/files/Parents_Guide_To_Transplant.pdf
It is early days and the best advice I can give you now is to find out exactly were the team are in planning and finding donors for Seb. It can be overwhelming, write things down and remember its never a problem to ask the same question again, you will be given lots of information. Try and take it one stage at a time and use the support you have from the hospital, family and friends.
Please keep in touch and up to date with Seb's progress.
BW
Hayley