Aibu to ask for help on how to tell ds I have leukaemia

[arghhhhhhhhhhh]

Hi everyone

Just wondering on how to tell my 8 year old
I got diagnosed with leukaemia in October it’s thankfully chronic and not acute with means it’s slow growing.. however it’s at stage 3 and although I’m not currently having treatment yet I am spending a lot of time at the hospital and my immune system is pretty crap so feel like I’m constantly poorly!
I thought I had hidden this pretty well from my ds and tried to keep his routine as much as I could but I got a phone call from school today asking if everything was ok because he’d been a bit quieter than usual and when the head teacher asked him if he was ok he answered that he was worried about his Mum dying so I think he’s worked out something is wrong and whatever he thinks it is is probably worse than the truth but I just don’t know how to start the conversation any idea or tips will be welcome 🙂

Thanks in advance

Aw bless him for wanting to help you get dressed definitely try and find some jobs for him to do so he feels like he's helping

Has he access to the internet? You might need to keep an eye on that.

Do you have an agreed treatment plan?

If it's 'watchful wait' then that presumably means your prognosis is good. Perhaps your DS needs to know that?

I was wondering if it might help to tell him about something not too alarming (maybe being tired?) and explain a couple of (really simple, easily achievable) things he can do to make home life a bit easier. Because it does sound as if he wants to do something so find him a something he can do.

I have an appointment on the 12th feb with a CLL specialist to discuss treatment there are a couple of trials he wants to speak to me about ...my plan was to wait till after that to tell him anything but obviously that's gone out of the window 😊

Ahhh bless him. He sounds very mature for his age.
Really hope you make a full recovery

My DH has stage 4 bowel cancer. He has responded well to treatment but it's incurable and the 5 year survival odds terrible. We have DDs aged 11 and 13. We have been pretty open with them as we've always been a team. DD1''s school offered counselling which was extended to DD2 when she started there in Sept. Last summer DH had a tough time with chemo and we all had lots of talks. At the moment he looks fine and is leading a normal life, but that won't always be the case. Various people gave my DDs books or recommended them. Some they found a bit babyish. The one we all liked was published by Winston''s Wish - "The Secret C: Straight Talking About Cancer" by Julie Stokes. They were 10 and 12 and they found it informative and useful. What they really wanted was facts.

OP, I hope your treatment goes well.

You need to tell him sooner rather than later. Kids take in a lot more than we give them credit for and your DS has picked on it already. If you talk to him he may have questions and I am sure you will both feel the benefit and like a weight has been lifted.
I had something similar when kids were similar ages. The eldest one cried and said he was relieved as he had thought it was worse news. I was stage 1 watch & wait. The youngest just went quiet but DS a year older said she had had a cry on her own later on. She had no questions wanted a cuddle and to cry in private whereas he cries quiet openly.
We try to protect them but if you are close they pick on little things and snippets/ends of quiet conversations etc.
Take care and I hope you have good news in March.

I have CML, so you’ve probably worked out which bits of my post don’t apply!

As you say you’re stage 3, I’m a bit surprised you’re on ‘watch and wait’ (which is in itself rather unsettling) Did they say why this is the preferred approach for you?

I had ‘classic’ chemotherapy whilst they ran tests on my bone marrow, then they switched me to a targeted drug, on which I have been stable since. I think that’s as good as it gets!

When I was 8, my Grandfather was diagnosed with cancer. It actually turned out to be a misdiagnosis. But nobody spoke to me about it and I picked up bits of conversations, hospital admissions etc.

What that told me was that it wasn't to be discussed. So I dealt with my fears without adult support.

You have tried to do the right thing and protect your ds from worry but what it actually does is leave him unsupported and create an environment where things aren't discussed openly.

You tell him that you have an illness called leukaemia, that affects the way your blood cells grow, and that the treatment can make you feel tired and poorly. You don't promise him you aren't going to die but you tell him the medicine is very good and the doctors are confident that they can make you better / control your illness / whatever the truth is.

Then you wait for his questions. He might ask complicated things, or nothing at all. But if he is old enough to ask, he us old enough for the honest answer.