Young-ish kids: to tell or not to tell, that is the question......

[Quarry]

I have very active kids of 12 and 10 and currently I have not told them. As I am only recently diagnosed, I think my approach will depend on exactly what I have/prognosis. At moment, they will not have seen any direct impact and that might continue for some years. However, I don't want them to learn from others sources (only a v small possiblity, but it is a finite possiblity). What other experiences/sources of advice do you have?

[Hidden]

Hi,

My 2 children were 8 and 13 when I was diagnosed 3 years ago and we decided not to tell them while I remained on watch and wait. 3 years on, I remain very well, they still do not know and we lead an active family life.

However, I can honestly say it was the hardest decision we had to make and if you asked me if I thought it was the right decision, I really don't know. That's not much help to you sorry!!

I hope you manage to come up with a decision that's right for you and your family and I'm sure you will get plenty of excellent advice from others on here.

Wishing you all the very best,

Jo

[Myrddin]

Our children were much older when I was diagnosed but they had already guessed something was wrong before I told them and were a bit upset we had not told them earlier having waited about 5 months. We told them because it was becoming more difficult to not be caught out by trips to GP hospital visits and cllsa meetings. I was clearly not myself. So if you have no symptoms then there is little to tell. I found it very helpful for the close family to know so they had premission to ask if they wanted and understood if I needed to rest.

[Newdawn Administrator]

I agree that this is a terribly hard decision Quarry. I haven't disclosed my CLL to anyone except my husband and a few close friends. I decided that I didn't want to spread the angst until absolutely necessary. I appreciate that's not right for everyone. (If I'm honest I'm not sure I want to know at this point!)

If you're reasonably well and not requiring treatment at the moment, telling them would have limited benefit and perhaps greater worry for them. I can't tell my son because he has special needs and it would cause him untold distress and confusion. He worries constantly about my health anyway so this is going to be a major issue at some point. But not this point.

I'd just be absolutely sure to advise the people who do know not to let this slip.

Regards,

Newdawn x

[HAIRBEAR_UK Founder Admin]

Hi quarry

It is very difficult. I was diagnosed when my kids were 9 and 11. It was three years ago I approached the community with the same question and opted for letting the girls know I was diagnosed with a blood disorder that didn't need treatment, but may make me prone to infection and could be treated in time. I think you are right, how the disease is in you, could make a big difference as will the sensitivity of your children.. Wise to prevent unfortunate leaks until you decide what to tell them..

They are little radars and pick up signals when things change. Some information helped me explain why I wasn't myself and allowed for the upgrade of our domestic hygiene and precaution. As time marched on the slow progress of my disease has allowed for gradual adjustments at the pace of the kids. They now know and understand, and as teenagers they are happy giving me the attitude, but do make allowances for me being dad. I guess everything is normal now?

Best wishes

Nick

[anaturallearner]

perhaps don't use the c or l word as they are scary - even for us. How about calling it lymphocytosis (abnormally high WBC) which is being monitored by the doctors and may one day need treatment...

Aussie Beverley

[splashsplash]

I really regretted telling my family without constraints. They then told everyone they knew and i noticed that people would treat me differently.

Chronic leukemia is not the same as acute leukemia but when people hear the L word, they think you're going to die within the week and mentally write you off.

Then there's the question of remembering who knows and who doesn't. People get upset that they weren't told immediately.

In retrospect I would tell no one, except my closest circle of supporters and then only with the proviso that they tell no one else. To explain my illnesses and 'social distancing' behavior to a wider circle, I say I have a rubbish immune system and leave it at that.

Other people thinking you are going to die, really affects how you feel about yourself, you become an invalid. In lots of ways I am much more alive since knowing I had CLL than before, now my life is about quality not quantity.

[jangreen]

Hi at this stage in the game you have no idea how the disease will progress with you personally. If you remain in watch and wait for the next 12 yrs ( I know someone in exactly that position) then there is nothing to tell. If your blood counts become unstable then forwarned is forearmed. Your consultant should be able, after he has data from your blood counts (perhaps as long as a year) to tell you whether you are in high risk or low risk markers. Then you may be in a better place.

[Quarry]

Many thanks to you all for your responses! Obviously a (very) wide variety of experiences and no right answer. You have provided fantastic food for thought as I learn more about what I have (starting with second consultant meeting tomorrow)

[milliemoo123]

I told my three (10, 13 & 20) at the very beginning. This was partly down to all the talk from the doctors suggesting I would probably need treatment straight away, but then low and behold I end up on watch and wait for a few years, so perhaps I could have saved them some worry! I've just started FCR this year and on reflection I think it gave me time to prepare them for the treatment. They all seem OK now and say they would have chosen to know from the start......but it's hard to judge

[Oleboyredw-uk]

This is a very late response, for which I apologise, however here is my penneth worth regardless.....

My children were 24 and 23, both live away, one at Uni. They happened to both be home the same weekend shortly after my diagnosis. So, I told them. I also told a few close friends (six to be precise), six or seven more know I have an immune system weakness, that will improve over time. They do not know I've been thru FCR treatment, just that whatever treatment I've had also has a 'short term' negative effect.

I'd actually like to be very open, but I will not, and every one of the people was told on the understanding that they only discuss it with me. To date they have not to my knowledge and none have turned their backs on me. In fact, one of the inner circle keeps pushing to meet (they are a long way from us and we meet quarterly taking turns to host each other for a weekend).

My reason for controlling my info, my mother, in her 80s know's quite a few of the people and I will not have her upset by this. I have explained this clearly to each one in turn.

I've also said to every one of the inner circle "ask me any question you like - but you must be prepared to hear an honest answer"

Rob