Telling children about a diagnosis

You may be facing talking to your children about your diagnosis - and wondering how to do this. What are you worried about most? If you have some stories or tips to share with others in this position, it may be helpful to know what worked, what didn’t, and what resources were most helpful.

2 Likes

My children were 4 and 7 when I was diagnosed. We asked for resources to help us explain things to the girls but got nothing. That was frustrating because I know there are resources available for when the child is the patient.
In the beginning we told them that my blood was sick and that I needed to take some really strong medicine. The medicine would make me very sick so I would need to stay in hospital but that it would get rid of the sickness in my blood and make me better.
We avoided using words like cancer or leukaemia. We also never told them I might die. We felt they didn’t need to know that unless we were told that there were no more options. Fortunately we never had to have that conversation!
I did relapse though and at that point we did tell the girls I had a type of blood cancer, but that a transplant for my sister would help. That was all they needed to know.
I did eventually get some resources which were 'stolen for me by a friend who’s son was being treated in a children’s cancer hospital. They do exist! It bothers me that they weren’t freely available to us.

2 Likes

Hi, my son was 30yrs old when I was diagnosed with CLL 14 yrs ago. He was not living with us and I told him over the phone, I regret this as I feel I could have done it more sensitively face to face and spent more talking it through with him, but I wanted him to be one of the first to know. He was fine about the way I told him.

2 Likes

Some really good advice there Jane, it must have been a difficult conversation to have as your children were so young. Where were the resources from that your friend got for you, as they might be useful to share?

It does appear to be there are lots of resources explaining cancer to children for when they or a sibling have it, less so for a child whose parent or grandparent has it. I will dig out some of the resources I have shared before, as it may be helpful to some people here.

2 Likes

We got some booklets which a friend got from The Royal Marsden. I think they were produced by ClicSargent, and in fact I’ve just seen you can download them from the ClicSargent website. We had one called ‘Joe has leukaemia’ https://publications.clicsargent.org.uk/?_ga=2.206116115.1251192724.1532423786-614068131.1532423786

2 Likes

Thank you for sharing the link to the booklet @Jane I think that will be really helpful to other users too.

Was anyone given advice on telling children/family from their haematologist or nurse specialist? Was it something you wanted help with but didn’t get?

2 Likes

I was not given advice about telling anyone. It’s a difficult one because everyone’s relationships are different. I think my thoughts would be, if possible, take someone with you to medical appointments. My husband is good at taking notes and it means I have not got to remember everything that is said to me. He might also be good at asking questions as my mind goes blank especially if I am in shock. I know realise I blurted out my diagnosis a bit to family and friends as it was told to me, perhaps that is not the best sensitive way as it really shocks the other person. I think it is best not to have secrets as often the other persons will know something is not right and their minds will go into overdrive and even children sense things and can be told in an age appropriate way and keep the lines of communication open.

2 Likes

Hello @Dan,

I was wondering if wanted to share your experience informing your children about a diagnosis? This has not come up on the forum yet and it sounds like our community members would find hearing about your experience quite valuable.

Yes I certainly will do that, do I do a new thread / post ?? Will get on it later this evening

1 Like

Hello @Dan,

You can post it write into this thread!

Hello all, as your aware I’m dan and when I was diagnosed with diffuse large B cell lymphoma stage for my children were 3 & 5. They were at the age not to understand much but i wanted to tell them as much as I could regarding my illness. They knew I was having lots of appointments and scans etc and once I found out how bad the cancer was I had to use crutches because it had spread to areas including my back and pelvis in 3 places.
Once I got to this stage I knew I had to try and explain the best I could to the boys what was going on. I explained that I had a blood cancer and it made daddy’s bones weak which ment I would need to use crutches and a mobility scooter ( they loved the scooter as they hitched lifts haha )
I told them that I had to have speacial medine every three weeks and it would make Daddy feel unwell but it will make me better in the long run.
As they got older they understood more and more as I still need to use crutches to this day. They enjoy coming with me to spread awareness at Bloodwise events. When they hear other people have had or got cancer they say “ that’s what my dad had but he’s better now “
I love my boys to bits and they were a massive help getting me through that awlful time, I’m glad I kept them informed as I went along my treatment as it built a better relationship.

3 Likes

Hi Dan, it sounds as if you have talked to your children so appropriately that they have felt secure and understood your situation. How did you do it without the manual that nobody has written? I have an image of you in your scooter with your children. I am so impressed and it really shows the benefit of open communication to build better relationships in a family. Take care of yourself and thanks so much for posting.

2 Likes

@Erica when I was diagnosed I didn’t even have any information regarding my illness, didn’t have a specialist nurse etc so had to deal with the whole situation on my own including telling my boys, the youngest still goes on the scooter now with my wife as she’s currently using it.
hope your keeping well?

1 Like

Hello @Dan,

Thank you for sharing your experience with the Bloodwise community. I am sorry there wasn’t any information regarding your illness of diffuse large B cell lymphoma at the time of your diagnosis. I wondered , if you wanted to share the process before you told your children? Did you have a discussion with your wife first? Or did you both sit down with your children?

Hello @Jane,

Thank you for offering advice to the community members. They would make a significant impact to to families who have similar issues.

@Jane, if you don’t mind sharing, did you have a proper discussion with your partner before informing your children?

Hello @Nirroc,

I was wondering if you would like to share your experience about informing your family of your diagnosis of MGUS in 2011, which converted to Myeloma in 2015? it would be lovely to hear your perspective on how you chose to tell your family.

Follow on from my previous post regarding telling the children.
When I was diagnosed me and my wife decided the kids needed to know everything as they always pick up what we’re talking about etc so we thourght best tell them sooner and better coming from us than picking it up in a conversation.
We decided not to scare them and sit them down but told them one night on the dinner table after we finished dinner so not to worry them we found this process much easier for all of us.
We carried on as normal best we could until I started chemotherapy but they were amazing even at that young age coming to check on me in bed giving me cwtches ( welsh for a hug haha ) and asking if I needed anything.
Since this we’ve become a really close family and tell the children everything and keep them in the loop, my wife has recently been seriously unwell at the beginning of the year with pnuemonia and septic shock resulting in her being in an induced coma touch and go if she would survive and in hospital for 9 weeks. She has also recently had to have 7 fingers amputated because of the severity of the illness but from day 1 I sat the boys down and told them everything that was happening and keeping them informed everyday of the progress and what was happening with their mum. I feel best option is to be straight with them.
Hope I’ve managed to help at least one person. Any questions about anything please do not hesitate to ask :+1:t2:

1 Like

I have to confess that only my wife knew about my MGUS diagnosis but there was nothing sinister in this as in all honesty we didn’t ourselves appreciate what it meant. In addition we completely down played the Myeloma risk because we thought it was so low.
However when the Myeloma diagnosis became apparent we were completely up front with the rest of the family including the very young ones and kept them up to date on every stage of my treatment so they understood exactly what was going on.

1 Like

@Corfu80,

I was wondering if you would like to share your experience about informing your family of your diagnosis with AML in April 2008? it would be great to hear how you informed your loved ones.

@Nirroc,

Informing loved ones, about your MGUS is a delicate situation.
What worried you the most informing your family when you were diagnosed with myeloma? Did you ask for any information about the subject?