Hi
I wanted to see if I could find a family who might be going through / have gone through what we are currently experiencing. My daughter is 7 and was diagnosed with Acute myeloid leukaemia (AML) last month. She has started her treatment, she has completed her first round of chemo. I’d love to hear uplifting stories, advice or tips to help us please?
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Hi @JessBish I am so glad that you have found us and I cannot imagine how you are feeling having a 7 yr old daughter who has Acute myeloid leukaemia (AML) and is on treatment.
I am not in that situation and I hope someone who is or has been will respond to you.
I copy some information from Blood Cancer UK for you
Childhood leukaemia | Blood Cancer UK
The Blood Cancer UK support line us also there for you on 0808 2080 888
I know our situations are different, but we often share similar similar fears, thoughts, feelings and practicalities.
All I would say is to look after yourself as well as you look after your daughter, because she will need you as a parent.
Please do keep posting as I look forward to hearing more about you.
Hi @JessBish,
Welcome to our forum although I am sorry that it was your daughters diagnosis of Acute myeloid leukaemia (AML) that brought you to us.
I hope that you others will reach out to you and share their own stories with you. Its so important to connect with others who share similar experiences and understand what you are going through. In case it helps, I have enclosed a link to our colleagues at Children with Cancer UK who might be able to link you in with other families to share stories and advice. Children with Cancer UK Also, Young lives Vs Cancer Young Lives Vs Cancer I would also suggest asking your daughters specialist nurse/key worker.
I hope you have good support around you @JessBish and like @Erica said , I hope you are looking after yourself. We do not underestimate how difficult this time must be for you. If you ever feel like talking things through, please don’t hesitate to give our Support Line a call. The number is 0808 2080 888 or we can arrange a scheduled call with you if easier.
Please look after yourself and keep posting on how things are going for you all.
Take care
Fiona (support services nurse)
Thank you, I will check them out
Thank you for responding, will do
@JessBish so sorry you and your daughter are having to navigate this. I can’t speak with experience of childhood Acute myeloid leukaemia (AML) but my husband was diagnosed last year. I hope that someone will come along to give you some help but I can highly recommend the Reddit leukemia channel where there are lots of parents that post and offer guidance.
If it helps, I know prognosis for children is significantly better than adults, and children are so resilient. My husband is doing very well post transplant.
Make sure you are using all resources available to you ~ any government benefits, any hospital and charities including MacMillan, Maggies etc. they will be able to sign post you on the full extent of support available both mentally and financially. Additionally Maggies was able to offer my children things like art therapy, play therapy etc.
Ask for help from friends and family. Be specific with what you need eg. I need help to clean the house, I need someone to hoover or trim back the garden. People want to help but sometimes don’t know how.
Sending you all the love I possibly can. Just remember, even when you don’t feel like it, you are strong and can do hard things. Break down tough days or moments, into seconds or minutes or hours (or whatever feels manageable on that particular day). Also, this is a life changing experience so focus on doing the things that you can for your family and de prioritise other things.
Hi there
Check out Oscar Saxelby-Lee
He was diagnosed with ALL at 4 years old he is now 9
They are on instagram too. Hand in hand for Oscar
Cancer survivor boy becomes big brother Oscar Saxelby-Lee: Cancer survivor boy becomes big brother
Thank you for your advice. I appreciate it
So glad to hear your husband is doing well too!