Explanation for a child: Hi, I haven’t... - CLL Support Assoc...

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Explanation for a child

Loves2walk
Loves2walk
35 Replies

Hi,

I haven’t written here in a long time, but have checked in and kept up with posts.

My husband was diagnosed 3 years ago and is on watch and wait. We are so fortunate that his numbers have remained steady the full 3 years.

We have a 4 year old granddaughter. She is a right young gal (as are all grandchildren) and her parents would like to tell her about her grandpa’s cancer.

Might any of you offer an explanation suitable for a child. We struggle with an explanation ourselves sometimes!

Thanks in advance!

35 Replies
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Newdawn
NewdawnAdministrator

Hi Loves2walk,

One of our members, MartyR posted some helpful publications on this subject a while ago. Here’s the post;

healthunlocked.com/cllsuppo...

I see you’re not in the UK so won’t have access to Macmillan leaflets but this one online contains a lot of advice about talking to children about this difficult subject;

macmillan.org.uk/informatio...

Best wishes,

Newdawn

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Justasheet1

My grandson is 5 and we just tell him that I’m sick when he asks why I need a nap or something along those lines.

4 in my opinion is too young to understand cancer. If you must, keep it simple or you may distress her. After all, you sound pretty strong. Would the average person who never met you suspect you even had cancer? How would a 4y/o comprehend it?

You asked so there’s my opinion.

Good luck and feel well.

Jeff

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Newdawn
NewdawnAdministrator

I have to be honest however (was typing same time as Jeff who I agree with) and say that I’d hesitate to tell a 4 yr old unless there were compelling health reasons and symptoms she would witness and struggle to understand. If your husband is asymptomatic with steady numbers over a few years, why does the need exist?

Personally I wouldn’t feel the need to tell her at that young age but I can respect your family’s position if you think it’s the right thing.

Best wishes,

Newdawn

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Loves2walk
Loves2walk
in reply to Newdawn

Thanks! It’s a difficult decision, I tend to agree with you.

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RomildaG

Hi Loves2walk, my husband got diagnosed when my kids were 7 and 5. Because there was no treatment involved we decided, on our specialist’s advice, to not say anything. Now the problem is that my kids are now 17 and 15, my husband’s still on W&W and I feel a bit guilty because they still don’t know! I do believe that if there is no treatment involved then it’s ok to see how your symptoms develop then say something when things develop. CLL is so strange, that levels fluctuate and I didn’t really want to worry my girls until there was a reason and also the internet is full of info of which some of it is not always relevant to the patient involved.

Good luck

Sharna xx

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cajunjeff
cajunjeff
in reply to RomildaG

I would not feel guilty at all. I do not think most kids would resent finding out and not having been told. I think they would perfectly understand you decided not to worry them with something they could not do anything about. Kids are smart.

Lovestowalk, put me in the group that would not share the news with your grandchild. Its a personal decision every has to make who we tell and who we do not tell. Its not a right or wrong thing. But your husband sounds like he is doing fine. I don't see the benefit in telling your grandchild anything about CLL. Whatever benefit there might be seems outweighed by the worry it might cause the child.

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Loves2walk

Thanks!!

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Loves2walk
Loves2walk
in reply to RomildaG

I was sorry we even mentioned it to our adult daughters at first!

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Ironj

I have a 15 year old and haven’t told her about my SLL. I’m on watch and monitor so I don’t see the need to upset her or make her a wreck. I want her to be with her friends and at school and enjoy her youth without worrying. That being said if the time comes I plan on telling her I have a blood disorder that needs to be treated and lay out the symptoms until the blood disorder in back under control. Best wishes John

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Loves2walk

Thanks for your honest replies! She’s quite interested in Terry Fox and the school suggested they run for someone they love.

That said, she’s a sensitive little girl. I feel the same way as most of you. I will pass our concerns on to her parents, they know her best. My husband is so fortunate to show no symptoms at this time.

Thanks again!!

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HopeME

I went through BR treatment starting a year and half ago. My kids were nine and ten at the time. I tolerated treatment well so most of the time I was relatively normal. That being said, I had some bad days and I was certainly sluggish for stretches. I didn’t tell my kids about my illness and while they knew I was unwell they didn’t connect the dots. Today, I am certain I wouldn’t be able to keep if from them as they are growing up quickly but fortunately I have no fatigue or ill effects so there is nothing to hide at the moment. I’ll probably need to come clean when round two arrives. As others have said, a four year old granddaughter is way too young burden with a cancer diagnosis, at least that is my opinion.

Best,

Mark

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Loves2walk
Loves2walk
in reply to HopeME

Thanks! I appreciate your honesty.

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GMa27

OH MY...She is way too young! I would not tell any child under 11 especially if u aren't having treatment and feeling ok. They aren't going to understand and might scare them. They may hear about cancer or hear about someone dying on tv, movie, in school or from other children. When you are tired or can't do something, you just say you are tired or not feeling good. I probably wouldn't visit with the child on any days that you don't feel well. It sounds like your husband is doing fine so I am surprised telling a 4 yr old is even considered. Our cancer is so different than other cancers. Maybe your daughter can go to ur husband's next check up with oncologist. It might ease her mind.

I have 4 grandkids. They weren't told till last year when I needed treatment. I was on W&W 12 years. They would have been upset all those years for nothing.

💕

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Loves2walk
Loves2walk
in reply to GMa27

Thanks! Kids have enough day to day without worrying about something extra. Wishing you lots of healthy days!

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DisneyMom

My 14 & 11 year olds know exactly what's going on. I've explained to them, to the best of my ability, how this cancer works.

My 2 year old obviously knows nothing.

My 4 year old however, he knows that mommy has a lot of doctors appointments. So sometimes when the fatigue hits, he asks if it's because of my tummy. (Drs for him equals upset tummy. Lol) we just go along with it. His understanding is limited to "sometimes mommy doesn't feel good. "

At 4, that's all they need to know.

Carol 🇨🇦

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Loves2walk

I wish you many many years of good health! Kids have enough to think about in their days. Thanks!

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claree_ford

My two oldest granddaughters (16 and 14) know there is “something wrong in my blood” that is progressive and makes me tired sometimes plus one or two other odds and ends, but at the rate it’s going (happily slowly) there will be little change until they are in their twenties (I hope....). To them that feels a lifetime away. I have not, and would not, use words like cancer or leukemia even for children their age. In fact when I do tell (very few) adults I explain first what it is, warn them it has a scary name and then tell them what it is called - once you say the word cancer they hear nothing g else. I think your granddaughter will think whatever comes to you is “normal” for ancient people like us and barely notice. At most “something gone wrong in your blood that makes you feel poorly sometimes”. Then as she grows up she can ask more when she feels the need and will know no one has been hiding anything from her (which i’m guessing is what is on her parents’ minds).

I do think though that this is your husband’s illness, not theirs. His health should not be discussed with anyone without his say so. Telling a small child not to talk about it makes everything worse and they are bound to try to work out how they feel by giving a garbled version to their friends, their friend’s mothers, their teachers..... before you know where you are acquaintances will be coming up to your husband in the street and asking “how ARE you”.

Sorry about the long post - kind of stream of consciousness on my thoughts - probably not at all helpful.... but I wouldn’t tell her yet.....

Best wishes to you all whatever is decided...long may your husband’s watch and wait continue.

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Loves2walk

Thank you! It’s a scary name for sure! I appreciate your comments. We’ve only told our nearest and dearest.

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KatieBlue

I think what claree_ was getting at is children aren’t always wisest with whom they share what, if it is decided that your granddaughter be told. If you want to keep his diagnosis limited to only those nearest and dearest, it is another reason not to share with children...

I pretty much side with those saying 4 is too young. As well as with with those saying it is up to your husband, not your children, to decide if his health information is shared with others, regardless of whether the others are family members or not.

Best wishes 💕

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Berthia

Hallo. I wish you and your husband well and hope you can make a decision that you feel comfortable with. I told close friends and husband of my diagnosis four years ago, but 'chickened out' of telling my adult daughters, then aged 34 and 32. I am still on W&W, holding my breath, and I don't regret that decision. They have had four years without worrying about me or Googling, never a good thing. Now my youngest daughter is expecting a baby - first grandchild--early in 2020, so even more reason, I feel, not to worry them. I think most of the replies suggest that your little grandchild is too young to be told, and I feel the same way. Time enough. Let's hope W&W continues for a long time. Best wishes.

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Loves2walk
Loves2walk
in reply to Berthia

We have only told those near and dear to us as they could see we were so upset. Kids have enough to worry about.

Wishing you healthy days!

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charliegirl

My comments are tempered by my late sister's diagnosis of myeloma. She was diagnosed aged 34 when she had 3 girls aged 6,4 and 18 months. She was never able to tell them about her illness and only her close family knew. While they had seen her struggling she carried on caring for them and working as a GP until just 4 days before her death aged 39.

Palliative care didn't happen in any organised way in 1991 and her death came as a huge shock to many ndmeant a sudden and unexpected change for these 3 young girls.

Because of this, when I was first diagnosed the first thing I did was to tell first my children and then ny 3 nieces - by then in their 20s. I saw a psychologist who helped me prepare how to do this. I was warned at diagnosis that I would need treatment sooner rather than later and they have now experienced a number of emergency hospital admissions.

I also have small grandchildren, now 5 and 3. The older one came to visit me in hospital when she was only a few days old. Because they are 2 generations away I feel talking to them about my illness. Is different.

When the older one came for a sleepover just last weekend, she spontaneously told me that I was old because I had wrinkles and had to go to hospital, but she wished I was young like her! That seems a good enough understanding for me...along with accepting that 71 is beyond the biblical life span of 3 score years and ten.

Every situation is different, however.

Charlie Girl

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Loves2walk

Thank you!

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Ladylin151

When I read this, I was gently appalled; no child should be subjected to this!! But suddenly, I realized, that's my own personal biased and not reality at all!! When my hubby was diagnosed he was very sick and in the hospital. When I heard the word "cancer" I was in shock and beside myself with worry and grief. I let my grown children know, carefully and slowly. So they came to the realization without me saying the C word. But his CLL is not what actually caused his symptoms, he is well and 4 years into watch and wait. There is no need to think he will not have many more. This cancer is different. And cancer as a diagnosis is different than it was when I was young. There are treatments and medication that bring so much hope! I pray that when your granddaughter learns the word Cancer, she learns it with less fear and more hope and understanding than I had at that crucial time. Teach her that "cancer victims" are not necessarily tragic or frail or losing their hair, and that modern medicine advances all the time and that loving each other thru the process is what we do.

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Loves2walk

As we’ve become more used to this cancer called CLL, we are less afraid of it.

I think you are so right about letting her know there all positive cancer stories.

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Smakwater

Loves2walk,

This is one of those things that for me fall into the category of human interaction. I believe that there is an optimum approach to such questions, and although someone talented with the the written word may provide adequate guidance, such as these are best offered in a greater personal environment.

As humans we are subject to perspective, and perspective is influenced by perception. In circumstances like this it is in my opinion that one should have a measurable understanding of the persons in sharing, and share in person.

There can be many correct answers to questions of this nature, however, if there is a questionable perception, there is no substitute for eye contact, touch of the hand, sincerity in voice, and the ear that listens. Especially between those who have earned each other's trust.

After considering our opinions with qualified thought, give your granddaughter your best effort. If you think you fall short, give her hug and let her decide when to let go. Appropriate your responses to her actions thereafter.

I believe from the perception I get from reading your post, that you will do just fine.

Your greatest asset will be that she trusts you because she knows that you Love her.

JM

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Loves2walk

What a wonderfully written response! Thank you so much for sending it, means so much.

This is such a great forum!

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blowinginthewind

This whole discussion is fascinating, different attitudes in different families and different ages etc. Personally, with younger children such as your granddaughter, I would suggest that if your husband is tired or doesn't feel great one day and she asks what is the matter I would be tempted to just say "his blood doesn't work as properly as it should and he gets tired sometimes, but it isn't anything to worry about". I wouldn't use the word cancer to a child because it is still linked to death in people's minds. My cousin was 4 when my grandfather was diagnosed with cancer, and 5 when he died. She was told that that he was in hospital from some months before his death until she was 8!

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Loves2walk

I like your explanation. The word cancer can be so intimidating for all of us, let alone a little one!

Thanks!

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BeckyLUSA

I left it up to my children to decide what and when to tell our grandkids. The youngest was 6 and the others were 8, 9 and 12. They both decided to tell the kids as my wonky immune system and fatigue was affecting my ability to “interact” with them. All four were told that “Nana” had something wrong with her blood that made her get sick a lot and tired a lot. They were told they could not be around me when they were sick. ( Normally, I was the one to pick up sick kids at school or daycare, stay with them when they were sick at home, etc) as my local daughter and son both worked outside the home.

Interestingly enough, the youngest one was the first to use the word cancer. A year after that were told, she came up to me one evening while they were visiting and said “ I’m sorry you have cancer Nana, I love you”. She had probably overheard something. The older kids didn’t really treat me any differently. Three years later, they all know I have a slow acting form of leukemia or blood cancer. They always ask how I am feeling before they ask if they can come over, etc. For us it has worked out well, but family dynamics are different for each of us.

The only person that treats me any differently is my daughter who is especially close to her father, will tend to ask him questions about me rather than asking me herself. I think she thinks I might tend to say “yes” to something I should say “no” to! She is probably right!

BeckyL USA

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Loves2walk

Families are a special breed for sure, lol. Thank you for your very kind reply.

How sweet of the youngest one to say that to you. Kids are so loving and wise aren’t they.

I hope you have continued good health!

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Stelladoro

Hi

I would say what is the reason she needs to know at this point?,If Grandpa is still feeling well I dont see any need for an explanation now!

Anyway just my opinion..Thanks have a great last weekend of summer!!🍁🍂🍃

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Loves2walk

Thank you!

Where did summer go??

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HopeME

It’s right in front of you..........assuming you are reading this in Australia!

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AnneHill

My Dad had cll. I was 7 when it was discovered and almost 11 when he passed. Very little treatment. We were told he had anaemia but when he was really ill I was told he was going to die. I can still remember those words.

Your husband could be here for years. I was diagnosed in 2001 and look fine. My Grandsons dont know but I would just say I had something wrong with my blood and It makes me tired. Only if I had to.

Let a child be a child. Iv had cll for 18 years. No need to make an issue. Thats my opinion. Anne uk

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