Ask about leukaemia

Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia and Myeloproliferative diseases. She'll aim to respond within 2 working days.

Little man - Leukemia

Posted by

my eldest has an optic glioma 18 months chemo starting age 2 he’s 14 (blind but amazing) now touch wood. Mum is currently battling lung cancer 3 chemo 6 imuno very thin and giving up.

youngest recently had petechia? No reason found 

April last year. + 80 bruises on legs arm and back he’s very active though. Testicular pain suspected twisted testicle for 3 hours then not - full bloods done - folate and calcium deficiency. (Enlarged haemoglobin) 

ultra sound of suspected enlarged spleen but fine. 

Frequent night sweats / aching legs / feels breathless - on clenil - salbutamol prescribed but not used for ages. 

would bloods without a smear have shown Leukemia? 

Im emotionally a bit low and tired due to caring for mum, being a mum and a teacher and having watched too many kids looking well with Leukemia be admitted and die - I’m not sure what to ask to allay my fears but scared not to ask and leave something that may need dealing with. 

Any advice gratefully  received. 

Caroline- Macmillan

Oh Libby,

you have a lot on your plate. I'm glad that your eldest is doing so well. The blood smear would have shown leukaemia in this case. However, he has a number of symptoms that I would be concerned about. I would go back to your GP for follow up or A+E if you really concerned. There is obviously something wrong with him that needs followed up.

We are here if you have anymore questions. 

Caroline - Macmillan  Information Nurse Specialist

Remember you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email.  

Eileen - Macmillan
Posted by

Hi ,

just checking in and tagging you to make sure that you saw the reply from Caroline?  


Eileen, Macmillan Information Nurse

Posted by

Yes thank you I did not sure I have enough capacity this week to process/ action advice. 

But plan is next week to phone oncology outreach nurse from older sons treatment to check youngest bloods - not sure he had a smear - CFC was ok platelet count and white count ok but need to check but also need to see if mum is going to have next lot of imuno and get her eating this week. 

His consultant is great and has seen him since he was 2 so thank you will follow up as I can’t not but everyone is telling me to stop worrying - but they said that about his brother too and that was an optic glioma!! Etopisde vincristine and carbo platin !! 

Just need a bit more back bone!! 

Thank you 


Ellen M-Macmillan
Posted by

Hi Liz,()

Thanks for getting back in touch with us and letting us know your plans. Hopefully you have manged to phone the oncology outreach number and get your son reviewed. We would encourage you to get him reviewed by a doctor so that he can be properly assessed.

I can’t imagine how you’ve cope up till now as you seem to be trying to do everything for everyone. Don’t be too hard on yourself. It’s understandable why you keep worrying about your youngest son’s health given what happened to his big brother. But as well as this you’re also looking after your mum and no doubt be worrying about her too. You’re not super human, it sounds as if you’ve got plenty of back bone. But it’s important that you look after yourself and get the support that you need, to help you to do the great job that you’re already doing so well.

It’s not uncommon for families to worry about other children after someone has a cancer diagnosis, but if it’s making you physically and emotionally unwell, it’s important that you talk to someone about how you’re feeling.

I can see from your activity that Elise one of our nurses answered your question about your mum. I hope you found the information helpful and can action some of her suggestions for you.

If you’re able and can manage to find some time it can be helpful to talk to us on our Support Line. Our lines are open every day from 8am till 8pm. Sometimes just having a bit of time to talk to someone who can listen to you can help. But if you can’t mange that’s okay too.

Best wishes and take care

Ellen-Macmillan Online Digital Nurse Specialist