Breast cancer & toddler

Nichole - posted on 11/20/2008 ( 11 moms have responded )

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I'm looking to connect online with other moms who are helping their young child(ren) cope with their mom's cancer. My daughter will soon be 3 and our family is dealing with breast cancer.

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Kimberly - posted on 04/13/2009

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One thing I learned along the way, is don't leave the kids in the dark about treatment and doctor appointments. Even though your daughter is only 3 she understands more than you can imagine. Kids listen to everyone's conversations it is better to find out from you then well meaning friends and family whispers. Also it helps to spend as much time with her when you do feel up to it just doing normal everyday activities. Reading a book and coloring with her are great ways to hang out. Also let her ask you questions and let her know that she can always come to you with her questions. But one thing to remember if you have a positive attitude that will flow down to her. Take care and god bless.

Nichole - posted on 03/09/2009

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Danielle,
Your info about how you're handling the Herceptin is very helpful - thanks! It's great to know I can look forward to having more energy soon. I'm still feeling tired, but not nearly so tired as when I was doing chemo so I must be recovering. That said, yesterday I managed to look after my daughter pretty much single-handedly the whole day and didn't feel utterly exhausted by the end of the day. It may not sound like much to look after a single 3-year old for a day, but it's the first time I've been able to do so since I had my mastectomy back in September, so I'm counting it as an accomplishment!! I think the changes you've made in your lifestyle, along with your attitude, probably have a LOT to do with why your bone biopsy came back negative. I don't have much success with meditation, but positive imagery works for me and I definitely need to do more of it. I've also made a few changes to my diet but need to make some more. I'm about ready to get back into regular exercise again, too. I keep wanting to get out for a good long walk (and last week I did, when the weather was warmer) but it's, like, minus 8 Celsius today and feels like minus 19 with the wind chill. It's gross, and I hate the cold. Hate it! Time to bite the bullet and pay for some indoor gym time, I guess (or get a yoga DVD). Spring will be so welcome when it finally comes. It's definitely later than usual this year! Thanks for the love; I'm sending some back your way. :)

Danielle - posted on 03/06/2009

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I know what you mean,it's so hard to put all you trust in doctors dealing with something that we're so limited in our knowledge and the end result is our life! I found (when I was in the same period as you, just finishing my major chemo drugs) a lot of things that really made me feel like I was taking better control of my body. The stuff I chose to do (eg. macrobiotic diet, excersice, meditation, positive imagry) may not be for everyone but it definitely made me feel like I was taking control of my situation, at a time when my doctors had very little hope for me.
I being treated as stage 4 because after my masectomy they found that I had 21 cancerous lymph knodes, so they sent me for scans and found that I had a lession on my spine that was not there 6 months earlier. So they said that I had a bone metastisis. They gave me a prognosis of 2-3 years. And it's funny because this is when I started making all of these lifestyle changes and I was feeling physically pretty good. I then became part of a study 6 months later and got a bone biopsy which by some miracle came back negative for cancer cells. apparantly this doesn't happen, but it happened to me! So now I've been taking Herceptin for 3 years(every 3 weeks, like you), and arimidex. They said I could get this indefinitely since they still concider me stage 4. So we'll see, in my mind, I'm cancer free, but in their mind I'm not.
It should eventually get easier after recovering from your major chemo drugs. Herceptin is a much easier drug to deal with. I'm at the point that I have the energy to be the parent I want to be, run a business, be active. No one would ever think I'm a cancer patient, but I am. In chemo every 3 weeks, Ct scans every 3 months, everytime praying that nothing new shows up, it sux. But I'm very greatful to have been givin my life back!
Sending lots of love!!!

Nichole - posted on 03/05/2009

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Danielle - wow. Sounds like you've had quite the path to travel. What type of chemo do your doctors have you on? Why do they suspect you could be Stage 4, and why are they not sure? It sounds like you've been living with the UNKNOWN for quite some time. I must admit I find it pretty hard living with the unknown and all the questions that come with a cancer diagnosis.... am I receiving the best treatment? Is the treatment working? Will I experience a recurrence? Is there anything more I should be doing to help prevent a recurrence? Man, it's bad enough that it's your LIFE that's hanging in the balance; so much worse when there are little ones to worry about. Most of the time I'm able to take things one day at a time, deal with what's in front of me, and be happy with what I have (and I get the impression you do the same - you sound pretty positive), but occasionally I'm frustrated by the uncertainty of it all. I'm a planner by nature, and although I have learned to take a more pragmatic approach when it comes to life in general, I still find it tough at times not knowing what my future holds. I mean, nobody really knows what their future holds, but I don't really have a good idea what my life is going to look like a month from now! I agree, it's critically important to keep things consistent for your kids, but the fact is that cancer and its treatment do necessitate some changes to family life. When I was undergoing chemo I found that I didn't have the strength or energy to care for my daughter an entire day. Often I couldn't physically care for her even PART of the day, and as a result she's been either with her dad, in daycare, or with my mother a lot more often than she used to be. I've recently finished the chemo portion of my treatment but still need to go every 3 weeks for Herceptin (as my BC is HER-2+). I'm feeling a lot better and am now able to take care of Julia on my own for longer periods, which is a HUGE improvement for all of us; however, I find myself utterly exhausted at the end of a day with her and have no time or energy left for my husband or for the things I need to do to help me get better and reduce my risk of recurrence (such as go for brisk walks, cook healthier meals, and rest appropriately). So I'm trying to figure out how to balance today's needs (having good quality time with my daughter NOW) with tomorrow's (making sure I'm still around to have quality time with her in a year). I guess it's like everything else in life - all you can do is the best you can do, and that has to be enough. I'd love to chat more with you (actually ALL the ladies responding to this email have been great!) and will probably send a message when I'm not feeling quite so tired & grumpy!

Danielle - posted on 03/05/2009

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Hi Nichole, I 'm so sorry that you have to go through this. My son was 2 years old and my daughter was 8 months old when I was diagnosed with breast cancer. My kids were too young to understand what cancer was. My son cried when he saw me with out hair the first time, cause it freaked him out, but he soon forgot about the change and loved to feel my bald head. I tried my hardest to remain consistant in my parenting since they didn't understand what I was going through. And I found that this helped ME more than anything. It kept me out of bed. I made my self smile and interact with my kids more, and really kept me more positive while going through such a horrible thing.
I've been in treatment for 3 years now. They're treating me as if I'm stage 4, even though, they're not really sure. I do feel great though and so far (knock, knock on wood) all my scans and tumour marker reading have been coming back fine. Who knows when I'll finally be able to stop chemo.
I ask my son (who is 5 now) if he remembers when mommy was sick and had no hair and he says "no".
I will send you lots of "white light" and pray that you can put this behind you and that it will be just a glitch in your past for both you and your kids!
If you ever want to talk to someone who is a bit futher down the path than you, please message me!
Love and Light.

Nichole - posted on 03/04/2009

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Thanks for your note Sandra. Positive thoughts and loads of love are two things I'm blessed with. My daughter had a pretty tough month or so when our lives first changed as a result of the surgery and the start of chemo, but she's really come around - though I'm noticing lately she's finding it difficult to be away from me. Probably a stage all kids go through at this age; you just never know what behaviour is "normal" and what's a result of the cancer. Oh well, it is what it is. Fortunately I'm through the worst of the chemo now and just have Herceptin to deal with for now. (More surgery to come.) My hubby and I have recently come to the realization/conclusion that Julia will be our only child, which is a bit sad but does simplify matter somewhat. Anyway, thanks for your note... glad to hear you're doing well and I sure hope that continues for you! Are those your boys in the pic? In some ways it's easier having a younger child as she doesn't associate cancer with death. Hopefully she never will.

Sandra - posted on 02/28/2009

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hey nicole on a positive note for the last twelve months i have been treated for breast cancer my children where devastated and thought cancer meant death, but i have just been given the all clear for now and feel as if i been given a new lease of life , my perspectives and values have completly changed,i know chemo can be absolutly awfull but be strong and fight your way through with positive thoughts, and loads of love. wishing u well.

Nichole - posted on 11/27/2008

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Angela, thank you. Your story resonates with me completely, and you've provided a lot of reassurance just in the fact that your youngest has taken everything so much in stride. I don't think any time in a child's life is a good time to have a parent who's dealing with cancer, and it must be tough to have four kids to help deal with this difficult time in their lives. When kids are younger, they certainly can be very flexible with respect to routines provided their immediate needs are met - but as you say there lingers the fear that if you don't survive, they may not remember you. I also have concerns that because I can't physically be there for my daughter in person at times, she might come to feel that I'm not there for her generally and that she can't rely on me. Probably I'm worried for nothing, but one does think of these things. And as she's not old enough yet to really give voice to her concerns, I'm left guessing a bit when she's showing signs of anxiety. Of course, with older kids, they have likely heard of cancer and are aware of its potential implications. Older kids are also far more attuned to shifts in household routines, more empathetic and involved in the issues their parents are dealing with, and so on. There have been days when I wish Julia was older so that we could communicate about some of the changes that she's had to deal with in a more meaningful way, but then there are many days when I'm relieved she is as small as she is and can live worry-free for the most part. And I'm extremely thankful that it's me and not Julia who has cancer - imagine having to explain to your 3-year old why SHE has to have chemotherapy, yet that's what some parents have to do.

I've taken the approach of providing Julia with as much information as I think she needs, and no more - though like you I haven't hidden my body from her at all. I usually wear a scarf on my head for warmth, but Julia sometimes takes it off me. She's aware of the big things, but I try to keep the day-to-day stuff out of her sight and mind as much as I can. Prior to the mastectomy I explained that I have something called cancer in my breast that's making me sick and that the doctor would take it out. I told her I would have a sore on my chest and wouldn't be able to pick her up for a little while, but that I would still be able to give her lots of hugs, and I let her know that Grandma would pick her up from daycare and keep her overnight. (I'm so lucky to have my mom here!) Julia thinks it's quite hilarious that I have just the one breast now, which is an attitude we've fostered. She knows I'm taking medicine called chemotherapy that makes my hair fall out and makes me tired and sometimes a little sick, but I try not to let her know when I'm headed to the hospital. If I have a blood test I usually try to remove the band-aid before she can discover it; I don't think she needs daily reminders of my illness. I do find it tough sometimes to find words that are both truthful and reassuring for her little mind. It would sure be simple to say "I'm going to be all better after I'm done taking the medicine," but I don't know if that's true so I won't say that to her (though I have to bite my tongue sometimes). It's hard to find simple, honest messages for a not-quite-3-year-old when it comes to your uncertain health!

I'm fortunate to have an amazing hubby who's also a wonderful dad. As a result of the surgery and chemo there have been several mornings and nights where I've just had to leave it up to him to care for our independent little miss on his own. It was pretty tough at first to listen to him find his own way with Julia, when both of them were frustrated and missing my presence. But with time (and a few tips from me now & again) they have certainly built their solid relationship into an even stronger one and can manage without me quite happily now when they need to. I know what you're saying about dads & multitasking though. I'm sure it's waaaaay simpler with one kid than with four, but I think moms generally pick up on some things that dads just don't. It's true that men & women are different. That said, if I weren't here I can't imagine anyone I'd rather see raising my daughter than my hubby. We did up our wills recently and I found it really, really tough to think about both of us being gone and Julia being raised by another family. My heart sure goes out to all the single moms out there who have to worry about their health.

My fingers are crossed for your continued good health, Angela. After I was treated for Hodgkin's disease it took years before I was able to relax & trust my health again, but it did eventually happen.

One day I'll learn to write BRIEF notes!

Angela - posted on 11/27/2008

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Hi Nichole

I'm Angela. I'm 39, married with 4 children. My youngest was 2 when I was diagnosed with Stage 3 Ovarian Cancer on Feb 22, 08. It has not been easy to go through surgery and chemo with little ones but we did it. I tried to be as positive as possible yet realistic when it came to my illness.I found the hospital stays to be the hardest on my kids. They missed not having me home at bedtime. We coped by having them visit me and I did my best to read the stories to them. I also called them before bed to say goodnight. When I started loosing my hair the kids got to see me shave it. I rarely covered my head at home so all the kids got used to it quickly.My chemo went from May to September so I was honest about how I was feeling. On good days I did everything that I normally did but on the tougher days I explained that I was feeling tired or sick and we adjusted the day to my energy level. Luckily my chemo schedule worked out right and I was never too exhaused for their birthdays.All the kids saw my stitches, staples and VAD line, and now they ask to see my boo boos once in awhile but it became old news to them rather quickly.

My older kids 12 & 9 wanted to know up front if I was going to die and I was as honest as I could be. I simply told them that noone knows for sure when they are going to die the one promise I made was that if I became sicker or if it was to spread I would tell them as soon as I knew.We had our 3 oldest kids start counselling at school and it has helped them to process their feelings. My youngest has this beautiful innocent way of just adapting and accepting the way our life changed througout my chemo. Now he is excited to see my hair grow back, he laughs when I wear silly Christmas hats for him and he tells me everyday that he loves me, no prompting he just says it all on his own!

I have been blessed with good health for nearly 3 months, I don't consider myself cancer free yet.I just take everything one day at a time.Each day I wake up, ask myself how I'm feeling, and start a new day.I'm grateful that I don't have nausea or pain. I'm thrilled to see that my abdomen hasn't started to swell again and I listen for the voices of my children.Regardless if they are cranky or happy I'm thrilled to be their mom.I cherish everything that they do. After 4 kids, I had kind of lost my excitement for the "little things".

I try to keep my fears to myself and maybe you do the same. I don't have the heart to talk to my husband about it but I am scared that I will loose my battle and I will leave 4 kids behind, especially my youngest. I don't want him to forget me, I don't want to miss him going to school for the first time, you name it I have those fears 4Xs over for all of my kids. It seems to me that as Moms we have the ability to multitask ten things at once and still notice when someones feelings have been hurt. I worry that my husband will not have this ability when he needs to.Its sometimes really hard to be strong all of the time but thats what I do. I hope that my "ramblings" can be of some kind of help to you, breast cancer is different than ovarian cancer but our experience as women and as moms is not. I wish you good health, Bye for now, Angela

Nichole - posted on 11/23/2008

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Carrie,

Thanks for your message. I've been reading your posts, and your article was just great. Sounds like you've been through a lot. You know, it's pretty easy to get sucked into a big black hole when you're dealing with cancer, but there are some really amazing success stories out there. Sometimes it can be hard to forget the scary stuff and focus on the positives. However I feel really optimistic, and reassured, whenever I read inspiring stories about people who have survived against great odds, and who have had to deal with a lot more than I have (and boy there are plenty of them out there). I was reading today about a woman who, while dealing with her own cancer, lost both her son and her husband. Yet here she is today, a survivor, happy in her life, finding meaning. It's inspiring to connect with people who've walked the walk and are still here to talk about it after the 5-year mark. The stats could be better for me for sure, but I'm all about beatin' those odds!!! I hope your family time is what it takes to bring you hope and happiness. :) I'm rather lazy and just had my last chemo treatment Thursday (therefore tired), but when I find the energy I will post some information that I have found quite inspiring about how people can help themselves when they have cancer. Granted I'm still in early days along this journey and have all the freshness of a new fight in me, but you never know, maybe there'll be something there that speaks to you too. :)

Carey - posted on 11/20/2008

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Hi Nicole! I just read what you wrote on the into page, you are an amazing person! We all are amazing people!! I am so sorry your cancer is back again. I am Carey, also 36 years old, 1 year BC survivor, stage 1, grade 2 BRCA1+, Triple Neg. I had a Bi-lateral Mastectomy w/ reconstructin, many surgeries/procedures, no radiation.chemo (saving it, due to BRCA gene), full Hysterectomy (preventive), precancerous moles removed from skin. I have 6 year old twins and it has been extremly hard on our entire family, I am on all sorts of antidepresants, I have migraines and OCD. My kids have had a rough time, they have had behavior issues, one needs to be with me ALL the time and the other is very distant. My husband was very caring at first, but now want me to "get over it"! We have been to couple therapy and also family therapy, but it seemed to make things worse, right now we are just trying to spend as much "family" time together as we can. We make sure to eat meals together, no TV or toys at the table, we do homework as a family, we have Friday movie night, my son is in T-Ball, we all go to every game. The togetherness, no matter how sick I feel, has made the largest change in everyones behavior. Good luck, we are here for you:)

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