Stage IV moms of young kids?

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jcb123
jcb123 Member Posts: 3
edited August 2017 in Stage IV/Metastatic Breast Cancer ONLY

Thank you all for your responses to my post a week or so ago, soon after my IV diagnosis. I have been reading the "life doesn't end after stage IV" thread pretty much every day when I wake up and when I go to bed, and it's one of the only things keeping me (semi) sane. But sometimes reading posts about grandchildren and the like makes me feel worse-- my kids are 8 and 9, and honestly I get jealous of posters who have been able to raise their children to adulthood. I'm craving stories of other women with this diagnosis who have young kids-- how are you dealing with your grief? With theirs? How are you and your spouse coping?

My 8 year-old had a total breakdown yesterday that left my husband and I shattered. The kids know the cancer is back, that it's serious, and that I'm not getting better. We haven't told them I'm going to die, but it's clear they know that on some level. My son crawled into bed crying "Mommy!" in this way that was just like when he was a desperate hungry baby needing to nurse. He needs me, and he is going to lose me. I can't believe this is the story I'm giving him for his life. I know this sounds like an oxymoron, but as much as I want to live I can't help but also want to escape all this and exit right now. If you have stories or ideas or inspirations, please please pass them along.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited March 2017

    My son was 6 at first diagnosis, and 12 for stage 4. No way around it - this part is going to be hard.

    Get counseling!!! Your grief is real, and you need a guide through this phase. Don't info dump on your kids - they know what cancer means, but do let them know that you aren't dying right now.* There is time.

    One thing my son has told me (he's almost 18 now)is that cancer is a thief. It took me away from him for treatment and being unavailable when I was sick. Luckily, he refused to see the barriers, and would hang out with me when saner folk would have given me a pass. Best story: I'm vomiting on the kitchen floor from chemo, and he looks at me with love and compassion and says, "You are going to clean that up, right?"

    Find moments with your kids to talk about what you and they are feeling. Watch for some odd behavior that might show up at school. DS got very anxious at school when he was away from me, so we had to deal with that. Rope in the school counselors. Some of them are angels. Move right through the bad ones till you get the good ones.

    Don't exit now, pretty please. That would leave them with an open wound. Chances are high that you'll be the poster that got see their kids grow up a decade from now. The story you are giving your kids for their life is that they have a rocking Mom, who lived and loved with cancer, who faced adversity and showed them what to do when life gets hard.

    As for the spouse, they are hurting too. Keep talking, even when you don't want to. I honestly think it is easier being the sick one, than the person loving the sick one. Husband had a scary bout and it was harder than being diagnosed with cancer. Some of that was because I was scared kiddo was going to be down two parents instead of one, but also when you are the sick one you get to do stuff about it: take pills, head off to treatment, etc. The path isn't so well defined for the spouse.

    Stay in touch here. These ladies are life saving.

    * That sounded harsh. But all of us are going to die - that's the unfortunate truth - even folk without cancer. What we want isn't immortality; we want time.

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  • Lucia42
    Lucia42 Member Posts: 63
    edited March 2017

    I was diagnosed stage 4 de novo in January. I too have young kids (3, 8, 11) and we haven't told them yet even though I've been counselled to do that since they probably suspect something's up. Just after the diagnosis I also had the feeling of let's just get this over with i.e. exit now, but that despair had slowly changed to hope over the course of a few months - largely due to what I've read on these forums. My husband and I had gone through a slightly tumultuous time the year prior to the diagnosis (taking each other for granted, stresses of young kids etc etc) Now of course everything's forgiven and we appreciate and support each other 100%. I concur that it might be harder on the spouses. My husband is seeing a counsellor at the cancer agency and he said that it has "normalized" it for him a bit. I cannot think of my kids and all the life stages they yet have to go through and me not being there or not knowing them as adults. Raising kids are hard work (im stating the obvious i know) and for me the payoff has always been is in the (loving, happy) adults they will become. I take comfort in the fact that strides are being made treatment wise, and also I would surely want to kick myself if, 15 years (okay 30 years) from now, I wasted all that time on worry and despair. I'm at the very beginning of this bumpy road - only starting treatment next week - and I think one of the biggest challenges for me is to reconcile myself with the not-knowing and uncertainty that seems the hallmark of this disease.

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  • JFL
    JFL Member Posts: 1,947
    edited March 2017

    I was diagnosed while pregnant with my first child (he is two now). Went from being the best experience in my life to my worst nightmare overnight. I have felt many times since diagnosis that this is a cruel joke and, honestly, it is just beyond comprehension sometimes. I feel extreme guilt over knowing that I am going to have a profound negative impact on my son's life due to this disease. He is so innocent and pure right now.

    Day to day, I barrel through raising my son and working full time at a high pressure job, working out, etc. and feel good. Although I know that I have mets, and deal with side effects of meds every day, it is somewhat removed from me and I find myself stepping back sometimes in shock at this reality. Anyway, I just wanted to say you are not alone. Sadly, there are many of us on these boards.

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  • josgirl
    josgirl Member Posts: 231
    edited March 2017

    my daughter is five and was 18 months when I was diagnosed at stage 2. Coming home from a big trip to Italy (which was awesome til the last day or so) the trip home I was throwing up and barely made it home. Straight from the plane to the hospital for me and a diagnosis of a brain met as my daughter sleeps in a chair in the ER. Luckily my mom was there and picked up the slack big time. I agree cancer is a thief. And I hate it more than anything that I am preparing for the worst and may not be able to raise her - but I pray every day to get to 51 as she will be 18 and out of High school. At the same time I was in the army and in Iraq for 3.5 years (not all together) and not only prepared for what could happen if I died but also the mental idea of it. I also saw a young man die before my eyes. I understand nothing is promised. But that was before my daughter and I have to say as a singlemom to boot I want to will myself the ability to raise her and be there for all her moments and times a kid just needs their mom. She knows I am sick and that I could die but at 5 that's still a foreign concept. But I am a very matter of fact person and just tell her what I feel is appropriate. I am also making voice recordings - my way of talking to her in the 'later'. Also cathartic for me. But most of all I am taking my moments when I can and cuddling every moment. I also get migraines (since my early 20s) and now have to differentiate to my traumatized daughter 'normal throwing up' and 'hospital throwing up'. This is so tough but there are a lot of young parents in similar situations and it sucks. We have to balance discipline and creating strong independent children with just wanting to cuddle them and say I love you all the time. And raising kids is exhausting on its own and adding cancer well we need more than anyone to not sweat the small stuff and do the things we A. Need to and B. That re-energize us. Easier said than done though. But one good thing is I am unable to have a pity moment let alone party because who can with a young child? She keeps me focused and many times I forget about the cancer even as I feel like I'm 80 from Femara stiffness. That is certainly a blessing. But I feel you and know your pain. Cancer is a thief. I also feel jealous (sometimes of my own mother) for the luck/ability to live long and see your children grown into adults and snuggle grandchildren. At the same time I thank G-d every day it is me and not my child There are just so many emotions and This. Is. Just. Hard.

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  • Rseman
    Rseman Member Posts: 281
    edited March 2017

    I have a 3 yo who was 10 months old when I was diagnosed stage IV de novo. She has no idea that anything is wrong however that may change. I just started a clinical trial and it will be the first time that I lose my hair during treatment.

    I am trying to figure out what I say to her if she has any questions

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  • singlemom1
    singlemom1 Member Posts: 434
    edited March 2017

    my daughter was five when I was diagnosed the first time in 2011 at stage 2.. She was 9 when it came back in Sept 2015. She is 11 now. She knows that I have cancer again and that it is a chronic illness that I will always be in treatment for. She does not know it is terminal at this point. I am her only parent and there are no grandparents or much family. Her life would fall apart if she knew at this time. I have responded very well to the treatment and know people have lived for many many years. I know my daughter and believe this is the best way to handle it for her. If I stop doing so well than that would be another story. I also understand your feelings about the grandchildren. I too pray that I may live long enough to see my first grandchild. Well I do more than pray about it, I plan on it!

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  • Twirp26
    Twirp26 Member Posts: 178
    edited June 2017

    I am diagnosed stage IV. I am still trying to get a grip. My son is 13 daughter is 10. I just signed the paperwork to start a clinical trial at md Anderson. I am sick with fear. Traditional therapy has not worked. I feel like I keep getting kicked down. I pray everyday that this will help me. I don't want to leave my kids or hubby. I'm going to see about therapy to help with anxiety. I know I need to live in the moment but I am crippled with fear. It does help to know I am not alone. I pray for everyone going through this.

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  • myra104
    myra104 Member Posts: 102
    edited June 2017

    Hello,

    I was also just diagnosed with mets to the thyroid. I have 3 children 5, 9, and 12. I have told the older one, the middle knows something is up, and 5 yr old does not. It's been a long 2.5 yrs of aggressive treatment already so they've seen the worst. Hopefully we won't get to the point I call "it's time to worry" anytime soon. I'm trying to back out of some of my work responsibilities as they are quite hefty. That way I can focus on my kiddos, healthy, and husband. Hope to keep in touch regularly.

    How is everyone doing? What meds are they putting you on?

    I'm being taken off aromasin.

    Anyone going for SSI benefits?


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  • stagefree
    stagefree Member Posts: 2,780
    edited June 2017

    hi,

    DH was 6 when I was Dx'ed. I waited till he was 10 to openly share it all. Until then his dx for me was lung arthitis :))))

    Being with me live as normally as I could for 4 years, he had already got used to mommy sick but around! That's the crucial part.

    Hope many years for you too.

    Hugs

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  • myra104
    myra104 Member Posts: 102
    edited June 2017

    Thank you❤️ My kiddos have become quite independent over the years.

    I don't think I will have the "bumpy head" this time around. AC I lost my hair and they would call me that.

    I am finding random breast cancer garb all over the house strategically placed by one of my littles.

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  • Bens_Mama
    Bens_Mama Member Posts: 46
    edited June 2017

    Hi, I am happy to have found this thread. I have been living with a mets diagnosis since May 2015 and was diagnosed when my little boy was only 12 weeks old. I had been 10 years out and had a wonderful pregnancy. Being diagnosed with stage IV in my liver, bones and lungs with such a small baby at home was such emotional torture I don't even know how we got through the time. All I know, is our little miracle boy has brought my hubby, family and I more joy than I have ever known and I picture his face every time I start to have a melt down and remember that miracles can and do happen! After being diagnosed, I went into hiding pretty much to get my mental game on and spent months just working on my mental game. I also visited a local priest who has huge success with healing (which can be stability, or living many years with a disease, or...) and tried to do anything I can to have some control- who knows right?

    After a lot of ups and downs 2 chemos, kyphoplasty to my spine, 2 doses of radiation and litres of fluid drained from my lung, I have been stable on a parp inhibitor since May 2016 which has allowed me to really be a hands on mom with my now 2 year and 4 month old. It has been nothing short of a miracle for me and my onc, who is SO black and white, has been shocked with my situation. I had a tiny bit of progression on my last scan but am technically stable- will find out more on Wednesday. This disease is terrible for everyone and anyone but knowing you have little ones who need you and knowing how much energy we need to be there can be so overwheming. I was quite unwell for some months during the first year of my son's life and thanks to my mother and hubby and amazing family he is as happy as can be. I have read about mental breakdowns etc and I can't stress enough how much my antidepressant Ciprelex has helped me. I take 1/2 tablet and it just cuts the edge. There was a point a few months after my diagnosis where I couldn't peel myself off the floor. I do have freak outs but not so much anymore- it's when that nasty fear sets in. I also take an anti- anxiety before bed (man I sound like a pill popper) to calm my mind cuz...after all....I need to be up at 7 to take care of my little one :).....and being in a relatively good state of mind is so important for healing. And I started seeing a social worker last year who has helped big time. My hubby goes there too. I don't know, there can be so much guilt involved with this sickness. Staying present is the only way I can deal cuz if I think of my little guy not having his mama I just go nuts. To top it off, we live in Canada where my family is and my hubby is from Switzerland so there's that fear of what would he do? Bring our boy to Europe (he has a very small family) or stay here? It's pointless to discuss because we just pray that I will be here for years to come and with a growing child who will be in school in a few years everything will change.

    Anyway ladies, we are all strong and remember that no matter how bad things may seem at times miracles happen each and every day!

    WIshing all you mama's a peaceful sleep,

    Maria


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  • Twirp26
    Twirp26 Member Posts: 178
    edited June 2017

    bens mama, thank you for your post!!! I'm pretty New diagnosed stage iv. My kids are a bit older but still young by my standards. 13 and 10. I guess they are always our babies no matter how old. Anyway, I loved reading your post. It gives me some hope that these bad days will dwindle more. I am in the process of qualifying for a trial. Unfortunately I have not responded to standard chemos. I'm praying for my miracle. I want more time!! Best of luck to you and your family

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  • Casun19
    Casun19 Member Posts: 111
    edited June 2017

    I love this post because when I see others posting about grandchildren my heart sinks. I have a 2.5 yr old and I know deep inside that I will never see grandchildren. My husband and I have been together for 10 years/ married 4 and we wanted more children. We had to "grieve" over the fact that this was not going to happen. This is a crazy thing to have to deal with, I also use Ativan to take the edge off. And if you are in any pain, make sure this is managed. Because that is the first thing that makes me snippy!!

    Check your local hospital. Sometimes there are support groups or programs you can request free through the hospital that is focused on children of parents dealing with cancer. So, either you can go talk to someone and get tips on how to discuss the topic with your child. Or your child can go sit with other children in a supportive setting.

    Lastly don't forget about yourself. We a very lucky and have tons of family help/ support. But over the last year my husband and I have just been on auto pilot to make sure our daughter is getting Everything she needs, Finding her a preschool, potty train etc. it's exhausting!! But we are now making a commitment to each other to have at least one date night a month. Find something fun and get your mind off the cancer

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  • Momojcbc
    Momojcbc Member Posts: 94
    edited June 2017

    I have three boys 15,11 and 8. It is scary to think I won't be able to watch them grow up. So I try not to think about it and just soak in every moment I can. This is all so new to me.

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  • livebig
    livebig Member Posts: 86
    edited June 2017

    I'm here too. 3 young kids - 6, 3, and my youngest turns one year this weekend. There is happiness in this celebration of his one year, but also with every celebration there is a twinge of sadness.

    Praying for you all

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  • girlwithacurl
    girlwithacurl Member Posts: 86
    edited June 2017

    My kids had their step up ceremony this week and even though it was only to third and fifth grades I cried like a baby. Every milestone means so much mow

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  • Twirp26
    Twirp26 Member Posts: 178
    edited August 2017

    I'm looking to just let out a little stage 4 pent up fear and anger. My babies are 13 and 10. I know many of you have even younger kids. Today was the first day of school. I did what I always do and take their pictures in front of the palm tree in front of our house with fingers raised showing what grade they are in. Today was hard for me. I had feelings of dispair as I sent them off. " what if this is the last time I do this?" I hate when i get this way. I know it doesn't help at all! I feel angry that I even have to deal with this. I want to be around when my kids send their kids to school!!! Just had to vent

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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited August 2017

    Twirp, my kids were 10 and 14 when I was diagnosed stage 4. Now my older one is 20 and home from college for the summer. Guess what? I can't wait for him to go back to school in Sept. LOL...just like every other mom (without cancer). Life does go on. And hopefully on and on an on. i know u were just venting, but I hope I helped u feel a little less despair.

    Stefanie

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  • Twirp26
    Twirp26 Member Posts: 178
    edited August 2017

    stefajoy, THANK YOU!!!! I was venting but your kind of response was exactly what I was looking for! That is so refreshing to hear:)) It lifts me off the floor when I see that you can be stage 4 and still have several years. I pray like crazy this will be me:) thanks again soooooo muc

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