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

I'm so sorry to hear you're dealing with this OP

I've got no experience but I'd maybe start by saying some parts of you aren't working as well as they should and you're spending time in hospital so the doctors can help to make you better?

I have cancer and a 15 year old, I told him that I have cancer but I'm fine and I'm not going to die (which was his main concern) I explained that I'd have to go to hospital a lot and that was to make me better. I know it's easier said than done but don't try and hide things from him, kids are not as daft as we think

So sorry you are going through this. I think all you can do it sit down and chat together. Be matter of fact, answer his questions and be honest. Talking in the car is good as he can ask questions without having to look at you. I have bought some nibbles and driven to somewhere pretty before for 'big' conversations. It means there are no distractions and feels like a safe place to talk.

As he is already worrying he will probably be very glad to have things out in the open and to know he can talk to you about any concerns or worries, often what you imagine is so much worse than the reality.

My eldest is 8 and rarely asks questions. She does devour appropriate books though, Macmillan may be able to point you in the right direction for specific books for your illness and his age range, your local hospice may be able to offer support too.

Also talk with the school. They may allocate an LSA to have a special bond with him, my daughter used to have an hours session once a week with some other students in the school who needed emotional support, cooking, board games, art activities, general easy nice activities for relaxation and to help build relationships so the children felt confident that there was someone they could talk to.

My youngest asks questions regularly, sometimes ones that are very hard to answer, usually at bed time when she is lying in the dark.

Wishing you both all the very best. A big hug to you both.

There are organisations out there that can help with this. Even though it is thankfully not a terrible prognosis, the local hospice may be able to help, I know ours do. Good luck

I'm sorry to hear that OP, and best wishes to you. Like PP has said, I think you need to sit him down and explain that your body isn't quite doing what it should, and you'll be a bit tired and poorly for a while. I'd use quite a mature tone so that he feels trusted and adult-y. Tell him that you can try to answer questions. It might be worth asking school if they can give him a person to go to when he has other questions or is feeling down. My best wishes go to you and your DS.

So sorry you are having to deal with this. DH has terminal lung cancer and we have had to tell DS, he's 17 though so much older than yours. We have been very honest about what the eventual outcome is likely to be and what treatment he is having, and invited him to come along to a chemo session so he can see it's just a drip, nothing scary, and to meet the oncologist to ask any questions he may have. He has baulked at that a bit and says if he can't see it he can pretend it's not happening, and he hasn't told any of his friends. We have told his year head and one of his teachers who was worried about him losing focus, and he told his driving instructor last week after he zoned out during a lesson and had to swerve. Macmillan have lots of information on how to talk to children about cancer which may help, I would recommend going into your local Macmillan centre if you have one.

So sorry - what a difficult situation. Macmillan have a good page: www.macmillan.org.uk/information-and-support/coping/talking-about-cancer/talking-to-children

I'm sorry you're dealing with this Cancer is a bastard, in whatever shape or form it comes.

Be direct and honest, and tell him as soon as possible. Don't shy away from telling him you have cancer, but also be clear that it doesn't mean you're going to die imminently or even soon. Explain the effects on you. He may want to know how long it's been going on for and why you didn't tell him sooner. Explain that you didn't want to upset him but you can see he's noticed and you're sorry (I'm not criticising your decision not to tell him immediately, just anticipating a potential reaction on his part).

I'm so sorry.

I think, as little as he is, the answer is honesty.

I was in your son's position but as a teenager and with my Dad (he had AML). The consultant told me and my younger sister with my mum but not my dad present. I think it would have been so much better to hear it from my parents themselves but I understand that they just couldn't do it.

Nobody every suggested that it might not all turn out okay. I can remember the cold, sick horror of it slowly dawning on me that I could lose him and then being too scared to ask either parent if my fears were possible. (he did get better that time. He was unfortunate enough to come out of remission after the supposed 5 year safety mark and by that time I was a young adult living hundreds of miles away and my mum told me over the phone that my dad wasn't going to get better. I already knew because I'd googled relapse rates and the experimental drugs he was on etc but it's still news I can't imagine having to give to my own children now, even if they were adults).

I don't know how it feels from your perspective, only from the child's. But my only advice would be to be as honest as you can in an age appropriate way. Leukaemia is so, so much more treatable than it was even 10 or so years ago. My aunt (dad's sister - no genetic link my arse) also had AML last year and her treatment was so quick and successful compared with my Dad's that there is just no comparison. The odds now are very, very good (I know less about chronic leukaemia but I think the same is true for the disease as a whole).

All the best
xxxxxxxxxx

My dad was diagnosed with cancer when I was 12 and died wren I was 13. My mum asked the doctor what to tell me and he said if I was bright, she should tell me clearly and plainly which she did. Appreciate I was a bit older than your DA but I would take the route of saying that something has gone a bit wonky inside and you need some special meds to try and fix it.

There's a really good thread with lots of support if you want to hop on over

CANCER SUPPORT THREAD 60! Here we are again... join us if you have any sort of cancer (or if you'...www.mumsnet.com/Talk/general_health/3071667-CANCER-SUPPORT-THREAD-60-Here-we-are-again-join-us-if-you-have-any-sort-of-cancer-or-if-youre-waiting-for-cancer-test-results

I'm so sorry for your diagnosis.

I had to tell my kids that my mum had cancer a few years ago - sadly we knew that she was terminal so it was a different conversation.

Marie curie gave us a fantastic info pack, if it's not downloadable on their website they should be able to send it to you. I also got a book from Amazon called When Someone You Love Has Cancer which was very helpful.

I'm truly sorry about your diagnosis OP.

I had to explain my mother's Acute Myeloid Leukaemia to my four children who were then aged 7 -11. They were extremely close to her, especially as we lived together. I found being truthful, telling them things at a level children's level and not making promises we couldn't keep helped. They knew we weren't hiding anything and didn't worry about things unneccessarily. When we did have to tell them that my mother's aggressive chemotherapy didn't put her into remission and she would die, while they were extremely sad they weren't completely unprepared for it.

I believe Leukaemia treatment, for all types of Leukaemia, has come on immensely in the last 20 years OP. I hope the next news you get is good news and you and your family get all the help and support you need. I have to also say that McMillan are fabulous and I'm sure you could get help there.

Sorry you are going through this, DH was diagnosed 15 months ago, first off we were just honest, said Daddy had cancer, he is having medicine which will hopefully make him better, then he had ops, which again hopefully will make him better. Unfortunately DH is now terminal which we told them on Saturday.

Don't promise that you will get better, be honest, we have always told DC's maybe a slightly watered down version of what we have been told, don't fudge any questions, keep school informed, ours new from the start.

My DCs are 12 and 9

I'm sorry about your diagnosis. That must be tough. I had breast cancer treatment when my DS was 5 and a year of treatment with various operations in the midst of it all. fwiw, I definitely think honesty is best. Tell your son the simple facts, but be truthful. i.e. admit that it's been a bit scary - if he's asking you if you're going to die, he's picked up on something. So admit it's serious, but then explain that it's going to be okay and that you're lucky because they can treat it. Explain that your immune system's a bit rubbish and what that means, then also explain treatment to him when that time comes. I told my DS that it would all make me a bit boring for a while, but that it would mean we could snuggle more on the sofa and watch more tv - he loved that! He's now 13 and I am still fine (touch wood!). I know it's hard but I'm honestly so glad that I made it more open. Apart from anything else, you'll have no end of worried friends, relatives, etc. They'll be hugely well intentioned, but all that concern can really screw up kids.

Be completely honest. We weren't when my ex was diagnosed and I regret that - it backfired when eldest found a hospital letter. Use the word leukaemia. Tell him your blood isn't working properly but there are lots of medicines and treatments that will help. Tell him hospitals know what to do and even though you might feel sick and tired, the medicine is designed to make you better.

For children, the fear is worse than being told the truth.

Winston wishes?

Always remember - children are nosey little things and usually know that something is up. Have you a treatment plan in place yet?

Explain simply what the illness is and what it does and how you got it (‘bad luck’ was how dad explained it). Tell them what the treatment will be and how it works/how you will feel etc.

I know not exactly the same but the Lymphoma Association produce an easy to read children's book to help kids understand what's happening to their parents etc when they have Lymphoma. It can be downloaded free of charge and I believe can still be ordered.

We were faced with the same thing when our son was just about to turn 3. The biggest part about it was to be honest with him and not try and cover up what was going on. There's still some residual effects from the cancer treatment for my husband but our son who is now 6 along with his sister who is 3 both just view it as normal. In some ways I think it's adults that start to freak in the face of the "c word", not so much kids especially not 12 and under.

Best wishes for your treatment. =)

Hi thank you so much I picked him up from his friends house he had been for tea... I told him his head teacher had spoken with me and that he was worried as he'd been a bit quiet at school and asked him if there was something he wanted to talk about ...
He said he was really angry and when I asked why he said because you're dying and you haven't told me!!!
Anyway long story short I told him I had leukaemia and my blood cells weren't behaving
He asked me if I had cancer! ( I swear he's 8 going on 18!! ) I was honest with him and told him about the amazing doctors I have we talked for about 10 minutes and he asked me if I was going to die 😢
I hope I've made him feel a bit better but I was shocked at how angry he was that I hadn't told him sooner hopefully now I've told him he'll feel able to talk about it and ask any questions that come up

That's good news OP.

I would also try to cut off any attempts he might feel he has to make about looking after you and making you better himself. Make sure you tell him it's the doctors' job to make you better and they are very good at it.

He will want to help, so maybe you can give him a task that he can do that will make him feel he is important and contributing to your recovery. Maybe ask that he keeps his room tidy? Tell him that will be a huge help to you. Or empty the dishwasher twice a week... or something like that.

I forgot to say before that I'm sorry for your diagnosis and have some . FWIW I had to tell our DCs that their dad (ex) was going to die. He was stage 4, terminal..... necrotising fasciitis... 3 days to live. Then he fought back and had a bone marrow transfer from his sister. 8 years later he's alive and kicking...

Also just wanted to say so sorry to hear of all of you that have had to deal with this too it really is just shit ❤️

He's just asked my partner to show him which clothes drawers are mine in case I need any help getting dressed ( a little confused as I've never need help getting dressed 🤔) so we explained it's not his job to look after me the doctors are the best people for that! He just looks a bit lost but doesn't want to talk anymore so I'll leave it for now it's so difficult this is not a conversation I ever wanted to have with him x

Big hug, big smile and something nice (cartoon or cake usually works around here).

Hi

I was diagnosed with a chronic leukaemia, also last October. Which type do you have?

I have teenage DC, and waited until I had a confirmed diagnosis and treatment plan before telling them (early Nov), by which time I could tell them I had responded well to the initial treatment and could tell them what to expect would happen next. Every normal blood test has helped push it to the back of their minds.

I was able to tell them about what it meant to be Ph+, but that might go over the head of an 8yo. But perhaps the idea that although at present there is no actual cure, if you respond well to treatment it’s normal/near normal life expectancy and probably easier to live with than diabetes.

Presumably you’re at first milestone, how are you doing?