17 replies to this topic

[evergreen]

I am 43 years old and was diagnosed with CML two months ago. I've begun Gleevex two weeks ago. My children are aged 8 and 12. I would rather not burden them with this news. Our family has seen much illness over the years and my son has sought counselling for anxiety in the past. Am I doing the right thing by not telling them?

[SRL]

Hi Paula,

We have a lot of things in common, I was diagnosed with CML at 43 and my daughters at that time were 9 & 12,

my Mom had bone marrow cancer and my kids had to deal with that, my youngest daughter would have

anxiety attacks because of it, she's very close with my mom. I had decided to wait to tell my children but my youngest

Daughter overheard a conversation so we had to tell them. It was very hard in the beginning but I really involved them

in what I had to do, my youngest daughter knows more about blood counts than most adults. I realized that if I had a

good day and was optimistic so were they (even if I felt like crap I put on a good front). I did have my youngest doctor see

a councelor. She still has her moments but they are fewer and farther between now. I have always told my daughters that

if i had to get cancer how lucky I am to get it now when the treatment is so effective. My daughters still have a lot of

questions and I try and be very open about it. I did talk to their teachers and I left it up to my kids whether they wanted

to discuss it with their friends or not.  It has been 2 years now, still not sure if I handled it the right way or not but looking

back, I'm glad my kids knew.

If you would like to talk further about it, please let me know, I will give you my e-mail address.

Best of luck with everything!!

Shelley

[lala]

hi----my kids were older:  14, 17, 20 and i started telling them that there was trouble with my blood, but we weren't sure what it was....and that was true.  that way, they got little bits of info at a time.  weeks later, we got the cml call and my oldest really feel apart......i truly believe, in everything, moms set the tone---if mom is ok with it, so are the kids..... rest up, kids require a mom with energy!!!!!  so hard if you have the same gleevec fatigue that i have!    i used to rest all day just so i could get up and act like a normal person when my youngest hit the back door!  remember my biggest tip:  i feel much better since taking 4 small pills a day instead of one large one before bed.  the deep morning fatigue is gone!!!!!!!!!!!!!  YIPEE!  let us know your thoughts!  lala

[nathaliece]

Paula,

I think you are in the best position to determine what is in your children's best interest.  I am 49 and the single mom of an 8 year old.  I was diagnosed in 11/10.  I decided to not share the specifics with my son at this time.  He knows I take a pill each night and that sometimes it makes me sick or tired.  I think he would have a hard time dealing with the news that his mom has cancer.  He watches tv shows like "Extreme Makeover:  Home Addition" and understands some people die from cancer.  I think he is too young to differentiate types of cancer and types of treatment.  It also allows me to, on occasion, live like I don't have cml when I am enjoying time with him.

Again, I am sure, as their mom, you will make the best choice for your children.

Best,
Nat

[CallMeLucky]

Here is a thread I posted a little less than a year ago when I was first diagnosed and had the exact same question.  I think there is a lot of good content in it so if you have a chance, please read it.  http://community.lls...tart=0&tstart=0

In my case, my kids were a little younger (4 and 6).  I decided not to tell them.  I saw no reason for them to carry this burden.  There was no indication that this disease was going to "take me out" any time soon.  I have not had to quit my job or have extended hospital stays.  I did not have to have chemo and my physical appearance did not change.  For me, the decision seemed right and I do not regret not telling them a year later because for the most part things are somewhat normal again.

In your case however, your kids are a little older.  I can remember when I was 12 and I knew alot more than my parents thought I did about everything.  So if there is a chance they know something is up then you are probably better telling them so you can educate them and control their anxiety.  If they know something is going on then they will be looking to you for answers even if they aren't asking you.

I already have my speech prepared for the day they do come to me and ask.  I figure eventually they are going to wonder why I take a pill every night.  I don't believe in lying so when the time comes I will tell them.

I plan to simply say that "daddy has something called a blood disorder.  It is problem where my body makes too many white blood cells.  (My kids know what white blood cells are and that they are what help them get better when they are sick.  I also prefer to use the word disorder rather than disease or cancer)  I will tell them that I have to take medicine to help my body make the right amount of blood cells.  If they ask I will tell them that sometimes the medicine makes me a little tired but overall it is not a big deal.  I will clarify that it is not something they can catch and it is not something that will happen to them or their mom.  If they ask if I am going to die, I will simply say "I'm not planning on dying anytime soon" and that they shouldn't worry about that, I will be fine.

It's a hard decision and difficult subject.  Whatever you shoose the important thing is to try to be in tune with how they are feeling and if something seems weird, talk to them.  They need to feel they can trust you and they need to feel they are protected.  Reassure them that no matter ever happens, they will be taken care of, that is the most important thing to a child.

Sorry this is upon you.  Hope you are doing well on treatment.

[Happycat]

Paula,

I feel like I could have written your post.  When I was dx'd, they rushed me into the hospital right away, thinking I had an acute form of leukemia called APML.  So when the girls got home to find mom wasn't there and their neighbor brought them over to his house instead, they knew something bad was happening, because I was always the first one they'd see when they got home.

My kids are 8, 8, and 10.  My eldest sees a therapist for anxiety issues.  She's also a clever monkey, and when her dad came home that first night and told them something was wrong with mommy's blood so they put her in the hospital to run some tests - she immediately assumed it was something bad like leukemia.

After the second night, when we knew it was CML and not APML, my husband just went home and told the kids straight out.  I left the decision up to him, since he would need to judge how they were handling it,and whether or not they needed more information.  The twins were fine about it.  Their only real worry was whether or not they could catch it.  At 8, I think they're a little too young to understand mortality.  Natalie had a harder time with it, had to go to her room and cry a little bit, etc.  My dh called me in the hospital and had me talk to her about it, just to help her understand that I was not in immediate danger and the treatment for CML is quite effective.  I think she needed to hear that I was positive and upbeat about it.

Because of Natalie's anxiety issues, I made sure to bring it up with her therapist ahead of time, so we made that a topic of our next visit.  I also made sure the school was aware of it, including her teachers and the guidance counselors.  I did the same for the twins, but really more so that their teachers would understand things were kinda crazy, and they might not get all their homework or school projects done on time for a bit.  I didn't want the twins getting yelled at when their parents were too distracted to keep them on course at home.

The therapist was also very good to make sure Natalie was getting her information from the right source - mom, dad or mommy's doctors - NOT the internet.  There's too much on the internet to scare you about cancer, and a lot of it is old information anyway.  I was glad we had involved the therapist in it, since it did help Natalie clear the air a bit.

I would have found it difficult to hide information from my kids.  I'm not a very good liar, or even "truth evader".  My predilection is toward openness, so I would really have to go against my natural instincts to keep it quiet.  So I did what felt right to me. Rather than keep it quiet, I have involved them in my care.  My twins heat up my microwavable heating pads for me when I have muscle aches.  I have them all help out when I'm too tired to cook or clean.  I rotate taking kids to the grocery store to push the cart and help lift the heavy items.  (It also works great for teaching them how to buy decent fruit, check for expiration dates, check for prices, etc.)  And they are even tasked with helping me remember to take my pill when I eat dinner - a very foreign concept to me and one I find so hard to remember.

Anyway, that's how WE handled it for our family.  I do believe every family is different, and only you can determine when and what you should tell your kids.  I'm glad you're bringing the issue up here, and think you've probably heard some good ideas on handling it.  Go with what seems right to you. 

HTH,

Traci

[Trey]

Another previous discussion of this issue:

Re: Who to tell about CML?http://community.lls.org/message/13414

[Tedsey]

I was also rushed to hospital (after my yearly physical gone awry).  I was breastfeeding both a baby and toddler.  Since it was a holiday and I was in the hospital so long for testing, it was arranged for my kids to visit.  My baby was oblivious, of course, but my just 3 yr old knew something was wrong,especially when he was cut off from the milk cold turkey.  We just told him my blood was sick and I had to take medicine that made mommy's milk bad for him to drink.  Since my husband and I have little help, I usually take the kids with me to see the onc and for CBCs, shots, etc.  At one point, I had to give myself shots at home for low WBC.  The kids observed that.  It was interesting at first, but everything became very mundane.  They got used to it and are used to me taking my "vitamins" every night.  For a while, my son even took his "vitamins" with me when I took mine (M&Ms).  However, that got old too.  This has all just become a part of our lives.  Presently, my body is in a stage where there are no evil surprises with the disease/side effects.  So, life is pretty much back to "normal".  Please take care and feel free PM me if you want.  My kids are now 2 and 4, a little younger than yours, and this is what worked for our situation.  But you know your kids and what will work best for them.  I am sure you will find your way.

Please take care,

Tedsey

P.S.  I also come from a family with a lot of tragedy and loss.

[janner25]

Hi - I was diagnosed in October 2010.  I was feeling fine before diagnosis.  The same week I was diagnosed, my husband started a 2nd shift job.  Within 1 week, the tasigna fatigue kicked in.  My sons at the time were almost 8 and 4.  Since I was a single mom during the week, I had a REALLY hard time.  I started getting low grade fevers, then add to that the exhaustion, and my oldest son asked "Mom - you've been on this medicine for a 'long time'...when are you going to get better".  So - I sat there thinking to myself what am I going to do???  He too has anxiety issues...so I decided to just be open without the scary words.  I told him that I have a blood infection.  That the medicine is to help my blood infection go away.  I asked if he had any other questions...well he had lots!  How long will I need to take the medicine, how did I find out, will I die, when will my fever go away, when will I stop being tired, then he proceeded to ask me if Santa Claus was real....(imagine my thoughts...being so honest with the CML questioning - then he throws that curve ball at me....thankfully he was still a believer last year ).  I also left the door open so if he had any other questions he could ask my husband or me.  He has on occasion brought up stuff - and I am thankful that he started the conversation.  He knows that I have good days and bad days - and I think he tries to help me on the good days (instead of the bad when I could use it...HA HA).  My 4 year old doesn't know anything - and we'll tell him - but not now or anytime in the future. My oldest went to counseling.  I think between my diagnosis and then my husbands shift change, it was a little too much in short period of time.

I agree with everyone though in that it is a personal decision.  I was just lucky that my oldest started the conversation.

Good luck!

[evergreen]

Shelly,

Thanks so much for responding to my post. I have found this to be a very isolating time for me. Sharing your experience has given me strength. Let's keep in touch

[evergreen]

Hi Lala,

I agree with you about tone. I think I'll wait for some good results so that I can set the tone in a more positive light. I can't answer questions with more questions, can I? Thanks for responding to my post. It has kept me centered

[evergreen]

Hi Nathaliece,

You make a good point: when I am with the kids I often have the blessing of forgetting for awhile and being in the moment with them. I plan to appreciate this more. Thanks so much for responding to my post. Give your son a big hug for me

[evergreen]

Callmelucky,

Thanks for the thread. Sometimes I feel as if I am going in loops! I understand your decision at this point. It is where I am at. Although, I am off work for a while and I don't volunteer at the schools anymore. The kids are noticing more and more and I am running out of ways to deflect and reassure. It's becoming exhausting. My husband, my parents and I are planning a family meeting after the school year ends. Your response has helped me create a plan that works for us. Thank you and wishing you well

[evergreen]

Hi Traci,

I believe I will make an appointment with my son's counsellor and prepare her for his visit. I will definitely bring up your experience to her.  I loooove it that your kids help you remember your meds...it's so empowering! Here I am hiding my meds right now! Must sound crazy? Sounds like your family has come together over this in a very healthy way! I plan to use your experience as a template and plan for the best results

[evergreen]

Thanks Tedsey,

I love that things have returned to a normal state for you. For awhile there I thought things would never be normal again. I imagined my children graduating school without a Mom to cheer To receive this news while breastfeeding two little ones is beyond my comprehension of strength. Thanks for giving hope

[evergreen]

Hi Janner,

It's the fatigue that really effects us, isn't it? It's one of the first things my kids noticed and asked about. It can be dehabilitating. None of us expect to be ill AND caring for children alone. I think I'll have to learn to call in some favors and create a firmer support system. I can see why you told your eldest child first...sort of a timing thing. I'll keep timing in mind and find the best time with the most support available including a counsellor

[evergreen]

Sharing your experiences has given me hope, strength and helped me to prepare a plan that I hope will work for us. Thank you all so much for taking the time to share.

Wishing well

[nathaliece]

Hang in there Paula.  Know that there are many on this site who are here for you.  In addition to your friends and family, know that those of us who are also on the CML journey are here for you.