Small children - what to tell them?

[Toril]

Hi!
I see that many of you posting on this site have small children. I find it at very difficult situation. I was dx with BC when my daughter was 2 years old, she is now 4. I am stage 4 with liver mets. She is my reason for living!! But, at I also sometimes wish I wasn't a mother. It is so hard, when thinking about the future.

I have told her I have cancer, I get treatment, but I will never get well. I havent spoken to her about I might die from her. the hospital now have asked me (and of course my husband) to consider if we want our daugther to meet with one of the nurses and talk about it.

To all the other mothers - what have you told your child? Any advice?

Thanks, Toril

[JohnL]

Our kids were older, but a close friend of ours with a brain tumour had two girls under 6 and one 10. She was a very straight, pragmatic type and her decision was whilst being gentle and optimistic, not to hide the danger or keep the children in the dark about what was happening. She dreaded the conversations and questions, but was always surprised by how the younger girls seemed able to adapt to whatever happened. If their concerns were answered and they didn't feel they were being left out of some obvious adult loop which had everyone around them behaving oddly, they just tucked it away and after a few days accepted - or at least coped in their own way - with whatever the current reality was. Today they are as normal and happy a group of girls as you'll find.

Not sure if that helps. Certainly doesn't make the actual job of coping or telling any easier. Though I am pleased to hear that the hospital nursing team are giving you some practical support.

I've attached links to some UK sites that discuss this issue and provide some guidance, which you might not come across if you Google for information in the US.

Good luck

John L

http://www.breastcancercare.org.uk/content.php?page_id=509

http://www.cancerhelp.org.uk/help/default.asp?page=7213

http://bmj.bmjjournals.com/cgi/content/full/316/7135/880

[Marlys]

A nurse at one of the sites of Mountain States Tumor Institute was diagnosed with bilateral BC. Her husband told me that when they decided to shave her head they allowed their 5 year old son to do the clipping. He was so concerned for her and kept asking her if she was doing o.k When he told me this I cried because I think this is a wonderful way to involve the child in her care. I am a firm believer that children know something is going on and that they need to know what in order to avoid fear of the unknown. If they can't handle it they will dismiss what you tell them. But at least they will have the information they need.
Marlys

[madubois63]

My kids were 9 and 10 when I was first diagnosed. I told them the truth. I tried to tell them in terms they would understand, but they need to know and they will love and respect you more for it in the future. Kids in school will say mean things. I remember my mom always wore her hair in a bun and this kid made fun of her. I kicked him in the shins and have never forgotten it. He now cuts my grass (ha ha). I also remember not being told that my mom was married previously and that he died. My brother and sister are actually my half siblings (not that we cared or lived that way). But in the 60's and 70's it was a "secret." My cousin heard others talking and taunted me with the "secret." It was very tramatic. My point is TELL THE TRUTH AND TELL THEM BEFORE ANYONE ELSE GETS THE CHANCE TO DO IT FOR YOU.

[cocacolakid2001]

My little guy was four when I was diagnosed this past December (2005). For the first couple weeks--the stretch of time during all the testing that was going on--we didn't say too much to him about what was going on. I know he knew something was "up" because all I had to do was look at him and I would start crying. Once we had a better grasp on what was going on, we told him by keeping it simple but still truthful. Generally, it was that I didn't really look sick but I was, that I was going to get special medicine that would help me get better, but the special medicine was going to make my hair fall out and that I would probably look "kinda funny" when my hair fell out. When the time came, he helped cut/shave my hair off--and had a blast doing it, LOL! Now, a couple months into it, he carries on like it's just another day for him, except if I'm taking too long to go somewhere, then it's "are you putting your hair (wig) on Mom?". It's quite funny.

Not sure if that's what you were looking for, but I hope it is of some assistance.

[Lyn]

Can you all just humour me for a change, a not so serious problem, a mum problem for a change. This is something bothering my daughter and me of course, some of your young females and male may also fit the picture or have an answer/solution because of the same thing. Casey turned 16 last December, she has been doing this BC Tango with me non-stop, and I mean constantly since she was only 8 years old back in 98. On the last evening onboard the Cruise Ship Holiday from Hell, in typical movie theme, my daughter met a really nice, and I mean a really nice young man who turned 20 during the trip. Short version, when asked her age she hesitated and said she was 17, she thought he would not talk to her if she was any younger, and any older and she would have had ID and entrance issues, quick thinker my girl, so fingers crossed, the way I see it, her age is a stumbling block now, yes but, and lets face it in the end he gets a younger version, so in a way he has been forewarned with a bonus. It is turning out to be a very pleasant MSN relationship, eventhough they have had what she says "isn't a date" because he didn't use those words, "would you like to go on a date", firstly we met up with him the Saturday after the cruise, together with his brother in law who runs Karoke at a nearby Tavern, he lives over an hour and half's drive from our place, and said in the beginning of their friendship he would travel for the right girl, surprisingly he was asked for ID that night as well, he didn't even realise this was not a family night so that date was a bit of a fizzer, I left them alone for a bit and they chatted for over an hour then then we left. He did then take her to the Movies and dinner in a Thai Restaurant last night, he insisted on paying, and he had her in the front door by 10.30pm even after asking and knowing she didn't have a curfew as such, who could ask for anything more, is he not interested, or he is genuinely very respectful, strange my daughter remarked the previous week that he spent more time talking to me and making eye contact in our conversations. Casey said she would pay for the next outing, and he said OK ir you really want to. NOW, just about everyone is stressing her to tell him about the age difference, not even her father is concerned and says just let us all just wait and see, they have known each other for all of 17 days, the way I see it now there is a problem of only being 9mts out of date, so the whole night life/alcohal scene does not interest him anyway, the delema, he could be talking to a real 17 year old who wants to discuss the free Lip Gloss in the Dolly Magazine, or instead he could be brought up to date with a knowledge of life living with, and caring for someone with Cancer, I know we all would prefer the lip gloss scenario, she has travelled as well so she is full of info. I was ignorant of the word Cancer while growing up and only until my own diagnosis, but my gorgeous daughter never seemed to go through the awkward teen dating, there hasn't been time, for that matter she hasn't dated at all, I tell her that males are frightened that not only is she sweet on the eye but she has a brain and she can hold a long conversations with people on all levels and they are frightened she may reject them instead. I know to all of us 1 year is a prescious gift, my advice also was to see how this friendship steers in the future and address it when it makes waves or becomes an issue, in other words have some fun yourself for a change, as I mentioned she has a very low self esteem and I believe it is because she hasn't dated and it is so hard trying to build up her confidence, ironically her father didn't tell me he was 12 years YOUNGER!! than me until he had been an item in my life for over 6 months, a bit like can we keep the puppy until we find a home for it, I had a grin on my face for days, from ear to ear and so originally when he told me the "I have to talk to you about something" topic, my stomach sank, thinking he was giving me the flick, but our just past anniversay on the 26 February, marked 18 years of officially being together and in love more now than ever, well I think so. In comparison our family went to lunch to day at Sizzlers and there was a group of young ladies obviously in the 17 year plus age bracket having the equivalent of a food fight. Are we doing the right thing, they are still only at the HUGS hello and good-byes stage, I was joking and said to Casey he was new at this and is having a Reveal, he apparently wore glasses, had braces on his teeth, a very bad experience and has a home gym in his bedroom, so I think he never dated before either. Oh the real life, believe it or not I am enjoying her dating saga, this enables her to share something other than BC with me, mother daughter instead of the other way around. Thanks guys for listening to my Steroid Banter.


Love & Hugs Lyn

[Toril]

Thanks everyone for your kind reply! I've looked into the UK-links provided by John, and found them very helpful. When I lost my hair to years ago my daugther was two. She had now problem with that, neither with me loosing my breast. It was all natural to her. I have told her that I am going to loose my hair again, no problem with that either. she just wonder WHEN it will happens, and if maybe she could get a wig herself, pink of course.. :-))


I have been adviced to put a little letter in the mailbox of her friends in kindergarten, so that their parents will know whats going on. And ask them to be careful with what their saying, when their children hear it. Of course the staff is already informed.
Regarding the most difficult question I will speak to the nursesteam to get their advice what to say and when.


Best of luck to all of you
Toril

[lisahammo]

Hi Toril

Our stories are very similar. My son was 2 1/2 when I was first dx. My husband and I have always believed that honesty is the best policy, but when it comes to children, make sure it is age appropriate. We told my son that I was sick and needed special medicine to make me better. He hated the hospital and never wanted to visit me, and did not want to think that I was having the "medicine" in the hospital. Fair enough. He is now 5 and going through my third round of treatment. I explained that the "lumps" had gone to my liver and I needed more medicine. He has only just asked to come to the hospital with me, so I let him come and meet the nurses and some of the patients. He was full of questions, and I think it has helped him alot.

As for the big question about death, he has not asked. If was to ask, I would tell him that everyone has to die some time and sometimes we don't know when that is. But I want to stay with him as long as I possibly can and I will fight to make sure that happens.

We have had a small problem with him starting school this year, and me starting treatment at the same time. He is suffering a bit from separation anxiety, which is hard, but I think it is more that he needs to know that someone will always be there to pick him up from school, even if I can't.

Good luck with everything.

Love Lisa

[Toril]

Thanks for your response to my post. I agree with you, our stories are very similar. That made me interested in reading your former posts, and I am so glad you reached your first goal: Your son's first schoolday! Of course I can fully understand your worries aboute the future, and I think your idea with writing little stories etc for your son is a brilliant idea.

I understand you live in Australia. It couldn't be more distant from where I am, in Norway. But I'll be thinking of you, reading your post and wishing you all the best!!

Love Toril

[TriciaK]

This has been a wonderful, touching thread, and I just have to comment, even though I am now a great grandmother and the little children in my life are very little but have wonderful loving parents who tell them whatever they need to hear. So far none of the little ones have seen me really sick, except that my oldest grandson's five children visited us in the mountains right after my heart attack when I had to be on oxygen 24/7. They looked a little surprised at the funny tubes on my face, but quickly adjusted and gave hugs as usual. Their parents had told them that it was to help me breathe. Once before I got all this last round,I leaned down to hug my oldest little great grand (about 4 then). She lifted her feet so I had all her weight and I quickly explained that I couldn't let her do that or we might both fall over. I explained that her daddy can do it because he's 6'4" and really strong. She apologised and said "I know why you can't lift me up, Grandmama". I said "Why?" and she said "It's because you are so old." Out of the mouths of babes!! Now she is 9 and an artist like me and we have lots to talk about, even though I don't get to see her very often. I mentioned once before that when I was first diagnosed 21 years ago I didn't want any of the grandchildren to know because I didn't know how long I had to live. My two oldest granddaughters, pre-teens then, knew something was very wrong and confronted me most lovingly and said to me "We have to know how you are, Grandma, because we love you so much. We want to pray for you and make get-well cards, and be with you all we can. You have to let us know everything!" I will never forget that tender tearful moment and I swore I would never try to hide things from children again. All of your advice to Toril has been wonderful. And Lyn, your daughter sounds much more mature than her age, and with her wise parents I think all will turn out well. It takes a lot of love and trust and wisdom to be a parent (or a grand or great grand parent!) Too bad there isn't a book of instructions. Well, actually there is: it's called the scriptures. I think you're all great and I want you to know I love you and pray for you! Hugs, Tricia