I was just diagnosed with CML about 2 months ago (3/1/2011) at the age of 33. My husband and I have 3 small children ages 6,3, and 1. It has been so difficult to go through this and not let it change my childrens' lives. I am determined to let them have a normal life, even though mine isn't "normal" anymore. It is hard though when I have to keep going to the doctor and hospitals. They get worried now whenever I go out because they think I won't be back (after a couple of over night stays in the hospital and a few ER trips). I just want to know how everyone else deals with these kinds of issues. I have to figure something out to ease their minds, but it is very difficult to explain CML or cancer in general to a child. Thanks, Cheryl
Advice needed from other parents of young children
Posted 02 May 2011 - 01:38 PM
Hi - I was diagnosed last October...just turned 37 and have 2 boys, ages 8 and almost 5. I felt absolutely fine prior to diagnosis so I was fortunate on that end. However, tasigna kicked me as far as exhaustion. I should also add the same week that I got diangosed, my husband started working 2nd shift (3-11:30 p.m.). About 2 or 3 weeks into taking tasigna, my 8 year old asked why I was still 'sick' since I've been taking that medicine for a long time...talk about getting knocked out by a question! We originally decided we weren't going to tell them anything since they wouldn't understand...well that changed that night. I told him I have a blood infection and after about 30 minutes of questions and answers, he seemed better. His final question is still brought up almost weekly - when are you going to be less tired. No answer still...My almost 5 year old still hasn't asked anything but he is a bit more snuggly. My 8 year old has gone to 2 sessions of counseling to deal with my husband on 2nd shift - and I also found out that he's not worried that I'm going to die - just that I'll go in the hospital. So I think its in the front of mind.
All I can say is to be open to questions and invite them. It's harder with the 3 and 1 year old...they I'm sure don't know what's going on...I'm sure the 6 year old is wondering quite a bit. Just be honest...without scaring. I'm sure there is some material that your onc's office could provide as well in how to tell the children. I didn't tell my 8 year old exactly what I had - just a blood infection...that I'll be on medicine my whole life...that I will see the doctor a lot and that they will test my blood. He did ask if I was going to die. I told him we all die someday but I don't plan on dying any time soon. That seemed to satisfy him. I still get questions periodically on days when I'm exhausted...but unfortunately for all of us - this is the new normal.
I'm not sure how you feel overall...again - my only complaint is the tiredness - not all bad days...so on those good days, I do everything I can (which normally sets me up for some bad days ahead...but worth it at the time).
Posted 02 May 2011 - 01:38 PM
Hi Cheryl, while I can't offer any personal advice on the matter, here's a link to an earlier discussion - http://community.lls...age/62415#62415 that may offer some insight. Hopefully others will chime in too. We don' have kids, but we told the cats and they just looked at us wondering if it would affect their dinner. We assured them it wouldn't and they seemed to cope pretty well.
You're two months in, and its probably really awful right now, dealing with all of this, the emotional stuff, worrying about your kids, the side effects of the drugs, and possibly financial concerns too. Everything generally get better in about six months, and things will begin to seem more "normal."
Post here anytime, there are lots of people who have been through what you're dealing with and can help!
Posted 02 May 2011 - 01:48 PM
I was diagnosed 2/10 and I am a mom of 8 kids. Emily 21, Laura 18, Anna 16, Maggie 12, Mark 11, Greg 9 and Lilly and Grace 4.
Life is different now. Slowly getting back to normal. But then again, I have never been normal. I have had alot of guilt on all the responsibilities on my big girls as well as worrying about the little ones. As with the news today abotu Bin Laden, my Grace is upset about the talk of people dieing.....not sure if it is related to me or just her age.
I take one day at a time. Love and hold my kids, talk and text my big girls often. One day at a time.
As you respond to your meds, it will get better. Just like Trey said in one of his links....you might even get to the point that you just take your meds without thinking of your CML. I am not quite there yet. I worry about my kids and my poor husband....how could he manage without me!!
Bottom line, take a breath, hug your kids and I am sending you big cyber hugs!
Posted 02 May 2011 - 02:18 PM
I was dx at 33 as well and at the time our youngest was just 1 and our oldest was about 5... both boys. Obviously anything we would have told them at that time would have been in one ear and out the other being at that age it's hard enough to get them to understand "no, no" and stuff like that. As they grew things became more apparent to them and of course curiosity gets the better of them. They are now almost 6 and our oldest is 9. They have been informed about my being sick and that I'm not always able to do like I use to but take it with a care free atitude ( of couse the delivery of the info is also just the same) and they just carry on with their "important" stuff that kids do throughout their day. My youngest always went to my appts. (before he started school) with me and in no time he was even cheering the nurses on to "stick em" (drawing blood of course) I believe his responding to my visits and being sick has a lot to do with how we handled ourselves around them and basically just showed them both they had nothing to worry about. My wife and I also just want them to see everything as normal as possible and I think we've accomplished this. As they conitnue growing older and "wiser" I'm sure more questions will surface but until then we just try to just be at ease with everything. I still have really bad days as we all do but again... it's a matter of how we deal with it especially when our children are always present and watching us respond to whatever challenges we're given. I know... easier said than done... but hey we're not perfect and as long as we just keep trying to do the best we can and keep our kids in mind then I think thats all that matters. In my particular situation I no longer work and I've instead made it a point to take advantage of the time I get to spend with them as before I never had the extra time. Looking back I think they'll see just how lucky we all were to have more quality time together even though all the "bad" days too. Best of luck to you and your family!
Posted 02 May 2011 - 02:46 PM
This is a topic I also asked when I was first diagnosed last year. I was 37 and I have two young boys who were 4 and 6 at the time. My advice is to take things slowly and try to keep things as normal as you can around them at the beginning. Children are extremely intuitive and they pick up on the tensions in the home. You need to be honest with them, but recognize that there are things they will not understand and it may not be necessary for them to walk around with this burden. A lot will have to do with how you are feeling. Many people with CML start to take their medication and get back on with their lives. For the most part my life is very similar to the way it was before. I still work full time, we still go out on the weekends, I do cub scouts and birthday parties and all the other stuff I used to do. I'm a bit more tired, and I go to bed earlier, but still after they are in bed. Once in a while on the weekend I will get caught taking a nap on the couch, but they don't think much of this other than "daddy is tired because he worked all week".
We contemplated a lot about telling them. In my case it didn't seem necessary. I wasn't sick when I was diagnosed, it was caught during routine blood work. Yes I was depressed and my wife and I were visibly upset for a while. We started to notice them asking us strange questions and my little one would talk about us "always living in the same house and none of us ever leaving". Again, they are intuitive. I tried to be very aware of this and we tried to get back to a sense of normalcy with them. I had initially gone to a cancer support group and they were almost militant about how I must bring my kids in so they could talk to them about cancer and prepare them for what things were going to be like. My wife and I were not too thrilled about that idea. They swore up and down that the kids would know what was going on and we were hurting them by hiding it. To be honest I was a bit pissed at them for the way they kept coming at me with it. I asked them how they could be so certain when they didn't really understand my treatment options.
And there is the difference with CML from traditional cancer. We do not go for chemo, most of us do not get seriously ill from the drugs. We are tired and may not be able to do everything we used to, we may have stomach problems and other issues (I found out yesterday not to go in the sun with out good SPF sun screen, burnt up eating lunch outside for a half hour). Our treatment issues tend to be less noticeable then with other cancers. You will often hear people say "you don't look sick", it will piss you off, but you will learn to appreciate it to an extent. So all in all it comes down to how you want to raise your kids and how you want to present this to them. I didn't feel my little ones needed to know something that would just scare them and they may never have to deal with. There is a good chance I will be around for a number of years, so if I can get away with a normal life for them then why put this on them. As they get older and ask questions I will answer them, I already have it rehearsed. I will simply say that "daddy has something called a blood disorder, it's where my blood doesn't work exactly the right way. But daddy is very lucky because some very smart doctors made a medicine that I take every day and it makes my blood work the right way so I feel good and can do all the things I am supposed to do".
As you settle into treatment and things start to settle down and the fear starts to subside, it won't be as bad as it is now and it will be easier to deal with.
Hang in there, we completely understand how you feel. It will get better in time.
Posted 02 May 2011 - 06:15 PM
Thought you might enjoy this. I sent it to my boss, who has several cats that look very similar to the one in the photo, on the occasion of his first round of chemo for colon CA. It cracked him up. Now he has the nurse post it on his chemo bag!
I think the sentiment works for kids, too!
Everything is pretty overwhelming to you right now, I'm sure. I walked around in a fog for days. Then every little blip sent me into a panic attack (unfortunately, I left a paper trail right here on this board). I didn't think I'd every feel normal again.
Give it time and just be open with your kids, they are pretty amazing in that they know when something isn't right and most seem to deal with honesty much better than secrecy. Age appropriateness applies, of course.
Look forward to their college graduations, weddings, and your granchildren!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 02 May 2011 - 09:15 PM
I was just dx'd about a month ago. My kids are a little older than yours (10, 8 and 8). My dh was upfront with them early on, when I was in the hospital. He told them mommy had something wrong with her blood and the doctors needed to check it out. Then, once we knew it was CML, he told the girls it was leukemia and told them I would be taking Gleevec, etc. The twins were more concerned with "can I catch it?" The import of cancer or leukemia just went right over their heads.
My 10 yo took it a lot harder. She has some kid in her class who has been somehow touched by leukemia, so she knew something about it and it wasn't good. She had to go cry for awhile. Since she has anxiety issues already, I let her therapist know about it and we discussed it at her next visit. For the twins, if they weren't asking about it and acting unusual or upset or acting out, she more or less counciled us to drop it. Only tell them what they need to know as they need to know it, in other words. If they're not curious, then don't bring it up. For my older dd, the therapist wanted her to know that lots of people have lots of information, but the information will not always be applicable to your mom. The people with the best information about your mom are the doctors treating her and your mom herself. There's lots of scary stuff you can read on the internet, and sometimes it's out of date, sometimes it's wrong, and sometimes it just doesn't apply. So the best thing to do is to ask your questions directly to mom or dad. If mom or dad can answer it, they will. If they can't, they'll ask the doctor at the next visit and give you the answer then.
So that's how we left it with Nat. Her first big question was, "Can we still go on vacation next week?" So I had to wait to ask the doctor that question. (Answer was yes.)
Which brings up another point. I struggled with making things seem "normal" for them, or at least not turning everything topsy-turvy. So we went on vacation about a week after I was dx'd. (Of course, that's when the pain hit! Murphy's law.) I did what I could, and sometimes we had to slowdown for me. We modified things a bit, but we still had that time together.
Now, at home, I still haven't been able to get up to speed again. So I'm letting them help me. I have microwave heating pads I use for whatever part is currently aching. I have the twins go get them and heat them up for me. They seem to like being able to help mom. I'm trying to get them to clean a bit more, using the ol' guilt-a-rama on them. (Much harder to make this a success - they seem to have an innate resistance to cleaning!) I'm taking one of them with me to grocery shop, so they can lift items for me and push the cart. They carry stuff for me, help wipe down the counters, etc. I'm using it to establish a new normal for us, since my new normal will require them to adjust as well.
I know your kids are a little too young for all that, but if you can find some jobs they can do for you (like pick up the stuffed animals that seem to drop from heaven like manna all over the house), that should help you AND help them feel good about taking care of mom.
Regarding the particular issue of fear that you might go to the doctor and not come back, it is totally understandable. When I was pg with the twins, I had a 3-mo stay in the hospital, flat on my back, complete bedrest. My eldest was 2 yo at the time. At first, she was scared and a bit distrustful of me. I didn't look like her mom - I couldn't shower or wash my hair, I had that funny-looking johnny on, etc. She slowly, very slowly, grew to trust me again - took her about 2-3 wks before she'd climb in the hospital bed with me though. Even though I talked to her every day by phone, it was just different. I've often wondered if that abandonment wasn't the start of her anxiety issues. My only real advice for you there is to talk with a therapist who deals with small children if you have concerns about the impact on them. You can probably find one who works specifically with oncology patients and their families through your onc center. I must say that I found Nat's therapist to have some very useful advice.
The point is that everybody's "normal" is different. Things will change for your kids based on how you're doing. With any luck, you'll get through these first few months, feel great and just cruise on ahead. If not, you'll have to make those adjustments. And you're kids probably won't even realize that their life is all that different from their friends. If you grow up with it, you just get used to it.
Posted 02 May 2011 - 09:42 PM
I was 37 when I was dx and my kids were 11 and 9. I had passed out at work one day and was taken to the hospital. Needless to say, I was in there for a few days until the Onc got the results from some blood work back so my kids knew right from the beginning that something wasn't right. We (dh and I) were very open with the kids and told them I had leukemia. After I was able to come to terms with everything myself I made sure they understood that my disease did not mean I was going to die anytime soon. I made sure they knew they could ask me anything they wanted. I made sure we let both of their teachers know what was going on in case anxiety showed up at school. Once I started the G and started having side effects it got a little tougher to "hide" my true feelings; the fatigue, muscle aches, and bone pain were almost unbearable sometimes. We made sure the kids understood that when I am not feeling 100% they needed to step in and help out more and do more for themselves. That helped me a lot and also helped them feel like they were a part of fighting the disease. It has been a year and as I still have some bad days with side effects and still struggle with fatigue and anemia, my kids understand that I push through as much as I can but when I say I am tired that means I need a rest. Sometimes I feel bad for putting them in a position to deal with this at such a young age but in a lot of ways I think it has given them a better sense of acceptance and compassion. They realize that you can't tell what is going on inside by what you see outside. Hang in there Cheryl and enjoy those kids!
dx 3/2010 G 400 since
Posted 03 May 2011 - 10:44 AM
Thanks everyone for the wonderful replies. You are all so helpful. I will just "stay the course" for now and deal with it as it comes. Hopefully everything will level out in the next few months and I will get back to feeling like I can live my life normally. Right now, I feel okay, but I've had a few bumps in the road with adjusting to the Gleevec. I definitely hug them now more than ever..everyday, all the time. They probably wonder why mommy hugs them so tight. Some day they will be able to understand.
Posted 03 May 2011 - 11:15 AM
Hug them and kiss them everyday as much as you can!
A week or two post diagnosis, I came home from work with a bunch of toys, I had stopped at ToysRUs on the way home. I was just in the mood to do it. The kids thought it was great, my wife just looked at me and asked "did the doctor call with bad news today?" A mix of legitimate concern and sarcasm. Love them, enjoy them, spoil them. For me, they are what I live for and what keeps me going through this challenge in my life.
All the best....
Posted 03 May 2011 - 12:56 PM
Lucky... I don't think anyone could have said it better! I totally agree!!!
Posted 03 May 2011 - 03:06 PM
Well put Lucky! As tired as I always feel, I actually agreed to help coach my daughter's softball team this year because they needed help and she really wanted me to do it. When there are other girls on the field not doing their best or not even trying, my daughter yells at them saying, "hey - my mom has leukemia and she is out here for us even though she would rather be sleeping. The least you can do is try your best since you don't have cancer!" In some ways it makes me proud that she has such a good grasp on what is going on when she is only 10 but sometimes I feel bad that I have put her in the position to have to understand that. But I will say the first time she said that, the look on all the other girls' faces was priceless! If I make it through the softball season it will be a miracle because even though it is only a few days a week it is really taking a toll on my energy level.
Posted 03 May 2011 - 05:40 PM
I was diagnosed last July at the age of 28 when my kids were 5, 3, and 2. Now, they're 6, 4, and 3 (and I'm 29). It has impacted their lives, but more positively than anything else because their mommy isn't going 1,000 miles an hour anymore and is focusing on the more important things in life. My oldest and youngest have special needs, so my kids have already been around the block when it comes to medical stuff and doctor's appointments and surgeries were already a way of life. My 4 year old knows that the doctor takes my blood and looks at it to see if my medicine is making it all better. He knows that sometimes my back hurts because I have a boo-boo from the doctor checking to see if Mommy's blood is healthy. When I was really feeling bad, he knew that Mommy needed to rest a little more and was so sweet to ask me if I was feeling ok. Since January, though, I feel like we're back to a pretty normal life. I still get bloodwork every other week, but I think my kids are confident that Mommy isn't sick (since on the outside, I'm really not most of the time). Our pace of life has slowed down since my diagnosis, and that has honestly been the best thing ever for my kids and for me! Now that I'm feeling pretty good, I'm trying not to pile on more and more to our schedules.
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