Explaining watch and wait for lymphoma to children

[Mummymummymummmeeeee]

Does anyone have experience of explaining watch and wait for lymphoma to children?
DH has been diagnosed with an indolent lymphoma and we'll get the final results of all his tests this week, it's most likely that it will be incurable and that no treatment will be needed yet. The death rate from it is about 2-3% per year so he could live a long time - there's about a 60% chance he'll live at least until our 1 year old is an adult.
Our 4 year old knows DH has been back and forth to hospital for appointments and tests but we've only told him so far that it's because DH has lumps in his neck that might be a problem. Although he's probably picked up on the stress and worry going on too although we've kept things as normal as possible for the children.
I've read an advice booklet from McMillan for explaining cancer to children, but it only gives advice on explaining treating cancer, or terminal cancer. I feel like we're in a strange limbo somewhere in between that I don't want to burden DS1 with more than is needed. DS1 tends to ask a lot of detailed questions so I want to be prepared as much as I can be. Has anyone else had to do this and can offer advice? Thank you

So sorry to hear this, my only experience is helping to explain high grade cancers to children, but does OH have a specialist nurse? They can be invaluable in supporting patients and their families and may have some words of wisdom

Hi Op, I think at aged 4 you don’t need to go into too much detail. I think I would tell him that dad has some lumps in his neck and that he needs to go to the hospital on a regular basis for the doctor to check them. That at some point he might need medicine for this but not just yet. That he might hear you talk about it and sometimes you might be upset because you’ve been worried. I’d then be guided by him, ask if he has any questions and keep checking in with him. I’d also let his teacher know and he/she can keep an eye on him. As he gets older you can explain what cancer is in more detail. Try not to have whispered conversations in front of him as that can be more frightening than just hearing it spoke about normally.

Good luck for this week, lymphomas (low grade) are not curative but there are lots of treatments now if and when he needs them.

DH was given a card with the phone number for his specialist nurse but has lost it, we will try to speak to the specialist nurse at his appointment this week for advice too though, I think I'm just thinking ahead of myself worrying about it trying to be prepared.
I agree at age 4 I don't think too much detail should be needed but he tends to ask a lot of questions so I think it would be hard not to tell him more if he specifically asks, but I guess hopefully the questions will be spaced out over time.

I think the hardest question I can't think how to answer will be if he asks if DH will die because of the cancer. It would be truthful to say he's not dying now, but also at some point in the future it's likely that he will die from it, I'm not sure how to reassure him that DH isn't dying without lying to him

It wouldn’t be lying to say “Oooh not for a long time yet DS” and then move onto the next question. See how he takes that?

The problem is that it's hard to really know because although it's an indolent cancer it could transform any time into a more aggressive type.
When DS1 has asked and worried about death in the past I've explained that we can't know when or how anyone will die but that usually people die when they get very old and that it's very unusual for children or younger grown-ups to die and that has seemed to reassure him.
In that context I'm thinking I could explain that the cancer isn't making DH unwell now and that they'll keep an eye on it and if it does start to cause problems there are medicines that they can give him to make it smaller again, and that we can't really know when anyone will die, but that we don't think DH is going to die any time soon.
Does that sound reasonable? - truthful and being optimistic about his prognosis?

Yes, that sounds just fine.

Thanks, I think just writing things down has helped me to organise my own thoughts a bit more. Especially this week with the results due soon I think my own thoughts and emotions can be a bit all over the place, but I'm a bit more confident about talking to DS1 about it now I think. Thanks

I would give him as little information as possible.

The doctors are happy that daddy’s neck doesn’t need any medicine at the moment. That’s it.

He’s 4, you don’t need to be discussing cancer with him when there’s no treatment planned at the moment. When and if he needs treatment is the time to talk about it.

At 4 it’s too much information and it should all be on a need to know basis and at this point with no treatment you don’t need a cancer discussion.

My husband has late stage cancer. We took a lot of advice and worked very much on a need to know basis and our experience is that young children only need detail when something is happening and they need it in a simple and factual way.

“Daddy has lumps, the doctors don’t need to give him any medicine at the moment and we will see what they say after the winter” that’s the truth. Someone said to me

“Everything our we tell our children should be the truth, everything which is the truth does not have to be said”

The truth is he has lumps and he’s not having medicine now - fact

It’s cancer and may need treatment in the future which might make him feel ill - true but not relevant at this point

It would be truthful to say he's not dying now, but also at some point in the future it's likely that he will die from it, I'm not sure how to reassure him that DH isn't dying without lying to him

If it came to it, it would also be truthful to say that you don’t know what will happen because actually you don’t. You can say I don’t know but if I do ever know what might happen I promise I will tell you

Sorry I've just noticed your replies answerthequestion, thank you for taking the time to reply, and I'm so sorry to hear what you and your family are going through. I agree that ideally a 4 year old should only need to know the minimum relevant information, DS1 though as predicted asked what seemed like a thousand questions, that included what is cancer? Why can it cause a problem? What does a cell look like? As well as the questions like will daddy die? Who will look after me while you're at work if daddy dies? Could you and daddy both die? Will I get cancer? What causes cancer?
I felt like it was far more than he needed to know, but on the other hand it gave us the chance to reassure him on lots of things that he might have worried about otherwise if he hadn't asked. And I hope it means he'll trust us in future when DH needs treatment if we've been fully honest now - I don't think I could have got away with not answering all his questions without seeming like I was hiding something and maybe making him worry even more than he needed to.
I feel quite sad that he knows so much but I don't think we could have got away with telling him they were just lumps without him having kept asking to know what they are. Especially as he knew DH had had one removed to find out what it was - we couldn't have hidden the massive dressing and wound on DH's neck

We haven't told DS1 that chemotherapy could make DH feel ill though - we've kept that as being need to know information, he hasn't asked for details of the treatment, so we'll explain that when it comes to it - I think the furthest DS1 has thought into it will be whether daddy will get banana or strawberry medicine at the moment!

It's tricky isn't it? Whilst not the same cancer , my DS2 was diagnosed with a slow growing brain tumour at 5. His big brother was 10 at the time. He was by far the hardest to tell. Too young for too much detail , but old enough to work out if we were fobbing him off or not.

5 years post diagnosis and everything has gone ok, DS has had chemo, DS1 grew up immensely and was the best, strongest big brother he could be.

It is tricky, and I don't know if we've got the balance right, but DS1 seems to have moved on to talking about more normal day to day things again like minor problems that have happened at school rather than bigger worries. I'm now feeling lucky that we've got this time to carry on living a normal life at the moment without DH being thrown straight into treatment, given that it won't make any difference at this stage.
I hope everything keeps going okay for your DS2, it sounds positive if he's doing okay after 5 years, and it sounds like he's got a great big brother to be very proud of

We're also on watch and wait for a blood cancer. It's a total head melt.

DS1 is 11 and we've not told him anything at all. DH was diagnosed two years ago and is perfectly well. Never had any treatment or hospital stay.

There's talk of DH getting a transplant next year but it's very vague. I'm terrified of telling DS in case I get upset and I don't know how to deal with the "is he going to die" questions.

I think thinking about how it could affect our children has been the hardest thing about it all and when I think about them is when I've done the most crying. But although I've cried so much about it I didn't when talking to DS1 because I was focused on him in that moment and being calm and helping him through it, especially with him being so young. I think if you did end up getting upset talking to your DS1 then it wouldn't necessarily be a problem though - it might even help him to express his own feelings if you're able to show and talk about your feelings too. I think it did help me to think about possible questions in advance and how I could answer too. I hope your DH stays well for as long as possible.

It sounds like you don't need to tell your DS1 yet though at least. We couldn't really have hidden it from our DS1 as he wasn't in full time school and DH and I both work part time and do all our child care between us, DH had so many appointments as well as the neck wound that we just couldn't have hidden it in the way that we could have if all the appointments had been while DS1 was at school, and if the lymph node had been removed from a less obvious place, as we would have had to lie about where DH or both of us were for every appointment.
I think you're probably doing the right thing by not telling your DS1 yet if there's no reason for him to suspect anything. I wish our DS1 didn't have to know.

DS was 4 when I was diagnosed with Hodgkins Lymphoma. I told him mummy had poorly blood and needed special medicine that would make my hair fall out and that sometimes I would be too tired to play. I took him to the hospital with me one day (not a treatment day I was just collecting some medication) and he got to say hello to the nurses. He was more excited about getting a drink from the water cooler! I had to inject myself with G-CSF prior to chemo to help boost my blood cells and he used to watch me doing it and even helped sometimes. I never mentioned death or how serious my illness was and he just accepted things and his life carried on as normal. 11 years on I've just asked him if he remembers when I was ill and he has no recollection at all. I was lucky in that I had a fab support from my parents and sister who stepped in when I needed them. I hope this helps you a little . Sending lots of love and positive thoughts your way x

I didn't bring up death but DS1 asked, and the fact is that DH is going to die from his cancer, unless he dies from something else first, but he might live an almost normal life span, or there's a 10% chance he could die within the next 5 years, with a 2-3% death rate every year in between, and there's no way of predicting which it will be. Obviously we haven't explained it to DS1 in those terms but have told him it's possible DH could die from it but the most likely thing is that DH will live a long time with it - technically true - there's a 50/50 chance he could live at least another 25 years.
It does help though to think that although DS1 has asked a lot about it that it probably won't be what he remembers from this time, hopefully he'll remembers DH actually being otherwise physically well, we've just been away for a weekend that we booked while DH was going through all the diagnosis so that we would have something to look forward to, and we've had a great time, and we're focused on just enjoying normal life at the moment while we've got the chance

Thanks so much for replying. We're (me and DH) are also focusing on the fact he is well at the minute. Bit tired but nothing major. He has a appointment with the stem cell team next week so we will see what they say. He's a conundrum as he is so wells doing they don't want to put him through the transplant when it's not necessary.

I'm an over thinker so am maybe anticipating too much what DS1 will think / say. DS1 can be quite oblivious to what's going on around him - I'd have picked up by now something was up, but might internalise it all.

My own dad was unwell at various times of my childhood and maybe I'm thinking of my own reactions and feelings.

I think I can tend to over think things too and DS1 has probably inherited it from me! I did find the McMillan booklet about talking to children and teenagers when an adult has cancer quite useful in some ways - although it didn't help specifically with how to explain an incurable cancer that's not at a terminal stage it did help with the more general questions that children might ask about cancer - I think DS1 asked all of them except that it said young children might think that they've caused the cancer somehow. When DS1 asked what causes cancer I took that chance to tell him that it was nothing that DH had done, and nothing that DS1 had done and that it's not anyone's fault that it happened. He hadn't asked directly but I did feel him relax when I answered that, so I think it was useful to be prepared for what he might worry about.
It might be a useful booklet to pick up if you're at the hospital this week.
I hope it all goes well for you this week. It must be a hard choice to make, for my DH it will be more straightforward - I think they'll only give him treatment if he's actually unwell in some way. I think I'm still not fully able to mentally match him up and how well he is and the fact that his body is full of cancer tumours. It must be even harder for you to have to have your child go through something that you had to go through yourself. Sending you un-mumsnetty hugs for this week x

This may help you find the right level / language - it's aimed at children whose parents are undergoing stem cell transplants but may be helpful www.anthonynolan.org/sites/default/files/Lucy%20And%20The%20Good%20Soldiers.pdf

I am sorry that you have to have these conversations xx

Blood wise may also have some good information too - but I don't have a link, to hand.