My Grandson was diagnosed with Acute myeloid leukaemia (AML) at the beginning of December 2025. He has undergone low dose chemotherapy and this hasn’t worked . The doctors want to give him the stronger dose but this could be fatal and no guarantee of how long he will survive. The other alternative is to keep him on a lower dose to give him better quality of life with the same outcome. We are devastated as thought he would be able to have a bone marrow transplant and really thought he would be ok. Has anyone else had a child with downs syndrome in this situation ? Thank you
Hello @Flossy, welcome to the Forum - though I’m so sorry for the reason that brings you here.
I just wanted to reassure you that the Support Services team is pulling together information that might be useful to you and your family, and we will respond soon. I didn’t want you thinking your post had been overlooked.
You might also find it helpful to speak with our brilliant Blood Cancer UK Nurses on the Support Line (0808 2080 888) or via support@bloodcancer.org.uk. Not only are they a brilliant source of clear, reliable medical information, but they’re also incredibly skilled at helping people navigate the emotional side of a diagnosis; the fear, the uncertainty, how it affects day-to-day life when we’re worried about someone we love so deeply.
Thinking of you and your family, please do keep us updated if you are able,
Thank you for taking time to reach out and post on the forum
My heart goes out to you and your family, at what must be a very difficult and emotional time for you all. Whilst I cannot personally relate to your situation, I am myself a blood cancer patient, and I just wanted to reach out and tell you, you are not alone in this. This forum is the most wonderful place to be able to speak with people who have similar situations and can offer some support.
I note my colleague @Ceri_BloodCancerUK has responded and therefore i can with confidence she will respond soon.
If you have any questions about health issues, you can call DSA’s Helpline (Tel: 0333 1212 300) or email using info@downs-syndrome.org.uk. If an information officer is unable to answer your question, they can make a referral to the medical adviser at the UK & Ireland Down Syndrome Medical Interest Group (DSMIG).
We are still reaching out to other teams internally to see if we can provide any further signposting, but please do know that I echo what our wonderful Forum Support Volunteer @GenesisDevice said about the forum being a great place to find community and support from others affected by blood cancer.
Hello there @Flossy, I just wanted to welcome you to the forum and say how sorry I am to read of your grandson’s Acute myeloid leukaemia (AML) diagnosis.
It’s really so caring of you to join us here to seek support for him. I hope we can also be of support to you—I’m sure many forum members can appreciate what you and your family might be experiencing. These sorts of diagnoses can feel rather shocking, if my own is anything to go by.
While I’m sure you’ve had a steep learning curve about all things Acute myeloid leukaemia (AML), perhaps you’d like to read the great Blood Cancer UK research about Acute myeloid leukaemia (AML) in childhood: Childhood acute myeloid leukaemia (AML) | Blood Cancer UK
Do consider giving the lovely specialist nurses at BCUK a call on 0808 2080 888, and I see dear @Ceri_BloodCancerUK is sharing and looking into information that’s more specific to your grandson’s Down syndrome. My tip would be write down any questions in one place and then you can look them up when you’re speaking with specialists in case your brain goes to mush like mine can in these situations.
Do please keep us posted about how you and your grandson get on.
Good morning @Flossy, it’s no problem at all and is what we are here for
I’ve just sent you a Direct Message (you should get a notification) with some further information. Do let me know if you have any trouble accessing the message.
