Mothers with school aged children
Comments
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All these pictures, wow. Getting a bit dusty in here.
Congratulations to all for all these great, great moments snatched away from the disease.
Wishing you all many, many more of those with your loved ones.
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I have to say what beautiful pics of all the children.
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I second that! Beautiful kiddos!
It is surreal...when I feel good, it's easy to be in denial...and I prefer it that way. It's the only way I can stay present.
Someone asked about counseling. I also let my son's teacher know what's going on as well as the school counselor. I don't necissarily think that you have to wait until your child is visibly not handling things well to seek outside help. They can do a pretty good job putting on a good face (just like us). I don't think it would hurt to let him/her talk things out. The school counselor should know some local counselors. Also, if you have a place of worship, maybe a pastor may know of some outside resources as well.
So glad we are here to support each other. Milestones or hardships...love to you all!
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I second Kjones13. I immediately told my son's teachers, advisor and administrators. He's a Sophmore at a very competitive private high school. They were super helpful in looking after him as well as giving him extensions on assignments when he was having a hard time. We also have him seeing a therapist every other week which seems to have made a big difference in the positivity of his outlook. He's always been a glass half empty kind of guy and my diagnosis didn't help that of course. I've been noticing a real change in his attitude (hopefully he's not just faking it in front of me).
The harder issue was how much to tell the other families at school. He didn't want anyone to know initially but I warned him that once I lost all of my hair people would figure it out. He said that was fine. The funny thing is, none of his friends even noticed anything different about me. I wrote to each of their parents and each on said their sons hadn't noticed anything. Just goes to show they don't even look at us!
Thanks to everyone who posted pictures! Really love to see the kids!!!
Hugs, Susan
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So nice to be able to share all of this with you ladies.....thank you for all of your wonderful insight. It really helps to share here.
My 16-year-old doesn't want to talk about it, nor does he really want anyone to know about it....he has shown zero emotion, except when I told him that I was having a biopsy because the doctor thought it was back....I noticed he was holding back tears.
My 13-year-old son doesn't really talk about it either, but did show quite a bit of emotion when we were at church one evening right before I had surgery and we all went up front after service for prayer. He broke down uncontrollably. Was glad that he got it out, rather than keeping it bottled up inside.
My daughter has struggled off and on, but for the most part, she has done well. She only became anxious right before my liver surgery, but her teachers, whom I notified, were wonderful with her during her anxious times and allowed her to call me from school. What a difference that made for her! Little things like telling her I would buy her a Starbucks frappacino worked wonders for her! She, unlike my boys, tells anyone who will listen, which actually makes me uncomfortable, but its her way of dealing with it. Plus, I think she likes the attention....(LOL). Hoping she grows out of that really soon.
I know someday this disease will progress and I will start chemotherapy once again and then reality will slap us all in the face once again. Just hoping I can be NED for a few more years!
In closing, what's really hard for my kids is this.....I lost two friends in nine months to this disease......I was diagnosed stage IV just three weeks after one of them died. I can't tell you how many times we had a discussion about them (before I was diagnosed stage IV) that I didn't have the kind of cancer they had...that mine wasn't as bad.....UGH! .
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I am not sure if I am doing the right thing or wrong but I am shielding my 8 year old from this disease. My oldest know everything he is 18 but I think he thinks I will beat the odds he is more in denial. My little guy does not know how sick I am. At times he sees me struggle but I try to cover it well. I feel if I try to explain to him he will not understand he is 8 and he is super sensitive and very close to me. When I don't feel well he sleeps with me and rubs my hand. I think if he really knew the truth he would have a nervous breakdown. So I will hold off as long as I can. When I know time is right. I will try to explain. In the mean time I teach about haven and how nice it is. I just want him to have a normal childhood. This stupid cancer takes away our hopes and dreams and distroys our kids life's. Ever kid needs a mom to guide them through life. I know my husband is great and my mom will do everything and I also know my sister will step in. But no one could replace a mom. What worrys me how will he be in school during Mother's Day. When all the kids are doing things for moms and he does not have one. All these things really stress me out. During this whole cancer thing the only ones who really suffer are the children and that just breaks my heart. I am rambling right know.
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stella--you know your child better than anyone. You will know when the time is right. Those are sad thoughts...about Mother's Day...and I agree about no one taking the place of a mom, but I personally have two dear friends that are my age who lost their mothers to cancer...they are unbelievably strong, kind, loving, giving, awesome ladies...it gives me hope, that if they can develop into these types of women and be ok, my kids can do the same. Don't know if that makes sense.
Wildrumara--i am like your daughter. I once was held at gun point and robbed. I told that story to every person I met. I told it for years. It defined me. Then I stopped telling it and I let it go. Weird huh? I'm sorry about your two friends. That sucks. And even more so that your kids know the outcome. I don't know, but I wonder, if in some strange way, the other deaths will help them cope? Just a thought.
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Kjones - With both of my friends passing it definitely gave us an opportunity to talk about suffering, death, afterlife, etc.....again, we talked about all of that BEFORE I was diagnosed stage IV, but I'm so glad we had the conversation.
Stella - as kjones said, you know your child best. Eight is very young and as with my daughter, I don't say things to her that I know will obviously upset her. Last night, she said to me that she wanted to go see the new movie that is out "The Fault in our Stars" with her friends. Have y'all read the book or seen the movie? I'm thinking I don't want her to see it......Its about the two teenagers with terminal cancer.....I think it hits too close to home and could cause undue stress and fear!
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I think it is good not to tell young children the complete truth. Why? until the 'end' is near....then prepare them. They don't need the worry and in my opinion I want them to live as normal life as possible.
My boys are 13 1/2. The are happy normal kids. With normal problems. That is good!
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My 10 year old doesn't know the whole truth about my cancer either. I have told him the cancer is back and a few months later, I explained that I would always have the cancer and it was not going to go away. But, it is too early to tell him how this ends. I am working with my psychologist on this and she is in agreement that letting him have his childhood for as long as possible is very important. When the time comes, I will tell him. I want him to have time to process and be part of everything that happens, but not yet. He is very sensitive and empathic and I think, on some level, he already knows. But for now, my little 4th grader is having his "best school year, so far" in his own words, and that tells me that I'm doing the right thing!
That said, I think all kids are different, and some may need to know earlier. We all know our kids, and we are the best one to determine how much they can handle. My older kids know, and they are doing well, but they need help processing too. Both have had counseling. I talk to them too, but not too much. In little doses. Then we get back to fun and life.
I read The Fault in our Stars and I plan to go see the movie. I'm not sure I'd want any of my kids to see it. However, if they really wanted to see it, I don't think I'd stop them. They'd really be curious if I tried to keep it from them. Might make a good reason to talk about life, death, and all the good stuff in between.
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wildrumara, your children are so beautiful, just keep loving them as long as you can! They have you right now, and that's a wonderful thing.
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Thank you for starting this thread! I have a 3 year old and because of the crappy cancer I couldn't even have given him a sibling to go through this with. I agree with the others that this is by far the worst part. Sometimes I'll just lay in bed and listen to him and my husband downstairs and think this is what it's going to be like when I'm not around. But then my hubby will do something dumbassy ( like the other day when he took him to the toy store and said get whatever you want, just because) and then I remember just how hard I need to fight so I can be the voice of reason
Oh, and I have also thought of letters or videos and will probably one day to them, but right now it feels like a jinx. Does that even make any sense??
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kelly279, I agree with u we have to stay around we are the voice of reason. Even though my husband tries really hard u can't just go around and saying get what u want. When my husband and kids and I walk somewhere or just walking around the mail I walk behind them and I say to myself someday the three of them will walk in three not 4. And I just watch them and it kills me. I also think doing videos photo albums will just jinks me. So I will wait till last min like i do with everything else.
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Stella thanks for your reply. So glad I'm not alone in my feelings!
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About telling children about diagnoses... When I was two my little brother was born with a heart defect. The doctor's didn't expect him to live past infancy but my Mother who was an RN managed to help keep him alive until he was eight. As long,as I can remember I knew that my little brother was sick and that he would die from being sick one day. I understood, long before I really understood, that his illness was the reason for the many things in our family life that was different from my friends. When I was older and thinking about having kids of my own I asked my parents how they decided what to tell us and when. My parents said: "We decided that we would never tell you anything that we would later would tell you was a lie. It was so important that you could always trust that we were telling you the truth."
This is the rule I have used in talking to my kids when I was diagnosed. My youngest was 12 yo at the time. It doesn't mean that I have to give him every detail, but I can't lie. I won't pretend things are fine if they aren't. I answer his questions honestly. He asked the very first day if I was going to die from this. I had promised him his whole life that I would never lie. I told him "Yes, I will die from this. But my doctors think that won't be for a long time." As we have lived through these past several years, to include one brief period when my MO though I had serious mets to the brain and suddenly only had a year (which turned out not to be true.) I have never told him something that I later had to tell him was a lie. I think this has helped all five of my kids. They are afraid of what the cancer might do but they have never been afraid that they won't know what is happening.
I'm not telling anyone else what to do or what is best for your kids. I'm just sharing our experience. I appreciate how honest and open you all are. Going through this is hard, watching my children grow and knowing what I might miss is hell. Having y'all to share that with is such a help.
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Romansma; I don't know how old your other children are but my four girls are 15,17,19 and 22 and they all read the book and saw the movie "The fault in our stars" as a matter of fact we saw it together. Both them and I took comfort in seeing the movie. I have like Vadre been very honest about my stage IV but I give it to them in small doses. However, this movie kind of explained the whole process to them in a very beautiful way and it also proved that you never know when it is going to happen. I feel it explained details that are not always easy to talk about. I had my first round of bc in 2007 and then again as IV in 2012, we try to go on with life as usual but they know what's coming. Also, because they are aware, I think we all stay a little bit closer and love each other a little bit more and we don't let precious time just slip by.
I'm still planning for the future and counting on seeing them all graduate from college, get married and me becoming a Grandmother. It really kills me knowing that might not happen but I will not stop hoping.......
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Thank you for your posts Vadre and Tilda....I took something from both of them....Love!
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I went to see "The Fault in our Stars" with my husband this weekend. My youngest just turned 10 and I know this is a movie he isn't ready for. I agree wholeheartedly agree with being honest with our kids while taking into consideration what they are ready for. My youngest knows that my cancer has come back and I have also told him it can't be cured any longer, that I will always have it. So, when I am told that the time is near, I will tell him. My thought process is that will happen at least a few months before, if not about 6 months before I die. I want him to have time to process, but I don't want him to have to deal with something that he is too young to process right now, especially because, if one of these treatments works, it could be years away. I share this only as a point of view, knowing there are other points of view and there are no right or wrong ways to do this. Each child is different, and their readiness to deal with such adult issues doesn't happen at a given age.
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My kids are 11 and almost 9. It took me 3 months after my stage 4 diagnosis to tell them what was happening to me. My daughter was in tears at school but my son became overly happy and loud kid for few days. I told them that cancer was back and I have to take the chemo medicine. But they do not know that it is terminal. We bring up the subject once in a while, but we try to keep everything as normal as possible with their school, sports, music, etc.
Stellar, I know what you mean by Mother's day. In my son's grade 3 class this year, they did Mother's day tea. All the moms came and watched the kids sing, dance, read poems. It was lovely. But I kept choking up thinking my son may be the only one without a mother at another Mother's day tea. I am really hoping that this year was the last Mother's day tea his class hosts.
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I just want to say that I am honored to be part of such an amazing, strong group of women. As I read these posts I cry thinking of the fears we have and the reality we face. It also reminds me that strength like this is passed on. Our kids watch everything. They will learn what strength is through us. I really believe that I am passing that gift on to my kids. When they tap into that strength, one day, it will be something I helped teach them....something we all helped teach our own kids. Thanks for supporting me when it's not so easy.
Virginia
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Beautifully written, Virginia, it's our legacy
Me & my boys last weekend with their cousin's new baby, my sister's grandson.
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Fitzy, what beautiful children you have and also you are a beautiful women.
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beautiful kids! Love the pictures!
We all went out last night and caught lightning bugs! The kids laughed and smiled and I loved it. My son said "I think this is going to be a good summer." Melt my heart.
And I normally don't brag or post about my son's academic stuff, but you all will understand why his performance is so impressive...dealing with cancer at home everyday. He got all a's all year except one b. he made 97% on his end of year nc test for math and 92% on his reading. I'm just so proud if him...as we all are of our kids!
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Kjones13,
That is great and a lot to be proud of. It just makes dealing with cancer easier when we know our kids are doing the right thing or just going into the right direction. We all as moms do the best we can under our circumstances. I know on my worst day I will get up and make a bag lunch and make sure I walk him of to school. My kids are my pride and joy and they give me a reason not to give up and continue to battle the beast. You all are amazing moms with great stories.
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Well I am back. I kind of took a little break from the boards, too many things in real life were worrying me as it was and I felt worse when I logged on here. I have 5 children 19,17,14,11,and 6. I am trying so hard to give them a normal childhood, not filled with worry about cancer and losing a mom. I have done really well over the last year on Femara and I almost feel like things have kind of gotten back to normal. My energy has been better, I am able to cook dinner on a more regular basis, keep up with the house and the kid's activities and just feel better. So it's so ironic that at my regular appointment I tell my onc that I am feeling good, energy is even increasing. And then he tells me my tumor markers have risen
So I am scheduled for a PET scan next month but he is talking about switching to Avastin/Affinator next month if the markers are still up. I just feel like I had gotten used to Femara and it's side effects and now I am back on the roller coaster. I am less than 2 years into this diagnosis and I have already used up Tamoxifen and Femara. I feel like this doesn't bode well for the future, and I am trying hard not to lose my optimisim. And what really, really sucks is that summer has just started. My oldest daughter is home from college. I had really looked to relaxing and enjoying this summer, last summer I was still sick from my GI mets and worrying about tamox failing and starting up Femara. So here I am again. Almost in the same spot as last summer, feeling like I am burning up my options. I could use some help, experience, inspiration,.....anything you have to offer.0 -
I'm new to this board. I've been out of treatment for five years - dx 8/2008 2b ER+/PR+ HER- grade 2 2/10 nodes + -- and now they've found nodes in my lungs. I could even see the hot spots on the bone scan. I won't know the full extent until I talk to my oncologist next week.
My son was 3 and my daughter 9 when I was diagnosed the first time. Now my daughter is 14 and my son is 9. I should have read the "how to tell your kids you have cancer" advice online before we told them...right before their bedtime last night. They cried all night -- but today is a better.
It's going to be a steep road -- I hope it's a long one! It's really nice to be able to read through your profiles and gain hope from the diversity of pathways travelled here.
Hugs,
Suzy
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star--I really understand taking a break from the boards. I'm glad you felt like you could come back to get support. Your roller coaster ride (timing and all) are similar to mine. Yay for more energy and cooking (when you want). It's a good feeling to be able to "take care" of your family again. Are your tumor markers usually a good indicator? I don't know anything about them because my mo doesn't use them. I have just read others saying that they may fluctuate. Glad you are having a scan to double check things. It can be really overwhelming when the mo starts talking what if's. I can understand why you are feeling blah. You just got used to one drug and the thought of changing to others, not knowing how you will feel, or know if you will be able to be there for your kiddos like you are now...scary. I'm so sorry. I hope you will let us know the results of the scan. I will be thinking about you and praying for good news! Until then, keep on keepin on and love on those kiddos.
Suzy--so sorry you are here. Hopefully you will find these boards to be a wealth of knowledge and support. It's never easy telling children. I think them crying is perfectly normal...no matter how well you prepared. There will probably be more of that too. It's painful to see, I'm sure. When you get a treatment plan in place, things will settle down. There is no right or wrong thing to say to kids...they are resilient! I say just go with your gut. Your fears are their fears. I am sending you a ((hug)) and much love. Please keep us updated on your status so we can help support you.
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Kjones- thank you for your reply. My markers have been a good indicator so far, my mets were so widespread that I can't really use physical symptoms as an indicator because I never know what is a side effect. But the markers were down, I think the cancer was "stable" and I was feeling better so this kind of hit me kind of hard. I know some people can get years on Femara, and I hoped to be one. But as my Dr has pointed out, there are several new drugs on the horizon that are promising for breast cancer. I just need to get back on track with appreciating each day and not looking too far into the future. But, as we all know, that is so much easier said than done! What plans do you have for the summer?
Suzy-it will get easier. Like Kjones said, once you get a treatment plan in place you will feel better. My children have done really well, they know I take meds and they know I have Dr appts. and if they have questions I answer them truthfully, but in a positive manner. They don't ask much anymore. I hope I can keep it that way for a long time!
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Star,
I wish there was a guarantee, a new pill or a miracle I had to offer to help calm the fear for your children but we both know that there isn't such a thing yet. We know that it is sometimes impossible to watch our children without thinking about leaving them. All of us with MBC and children share the pain of bringing cancer into lives. They should be thinking about summer vacation, ice cream, boys/girls, fun.... Sometimes the wrongness of it all is overwhelming. Add to that pain and the anxiety of things constantly changing and it's almost completely overwhelming. When I am overwhelmed, like you sound right now, it is so easy to be consumed by the darkness. Just remember that you were right here, in this same overwhelmed place this time last year and yet this has been a wonderful year! I am not trying to be Pollyanna like so many who don't understand the meaning of "Stage IV." I promise that I know the reality. I, too, am facing right now the fear of having to give up a tool from my bag of AI tricks. I'm not suggesting that you should pretend that everything is OK. Just remember that you faced this darkness before and found a little pill and the inner strength to give yourself a good year, a year where: "I almost feel like things have kind of gotten back to normal." The little pill helped, I know. Having SE mostly under control helps too. But mostly I think it was your own determination to care for your children and give them a life not focused on the darkness of cancer that gave you that year. Yes, it is possible that the Scan will show new activity and you will have to give up your Femara. But don't forget that there are more tricks in the bag and, as your MO said, there are a couple of amazing treatments just on the horizon.
You asked for help, inspiration, experience. Well, there is lots of it here. Many women who, like you,
have faced a Prognosis that sucks, looked it in the face and still managed to watch a Tball game like it was all that mattered in the world. I can't say anything that changes our reality. I do think that there are some really exciting discoveries coming, but those may or may not help us with the next six months or a year. What will help is remembering that you found the strength, deep down in a place you didn't know existed, to make this last year a happy one. I believe that you can find that strength again.
I have become hooked on the show "Game of Thrones." I'm not one of those crazy fans who dresses up and pretends I live in the Seven Kingdoms or anything, but I really like it. I know it seems ridiculous to answer your sadness, pain and fear with a quote from a TV show, but we get our inspiration where we can. There is a line that comes up from time to time that sometimes helps me get out of bed or just sit and watch TV with my teenage son. It's not a false promise or a magic pill but it helps me sometimes and I hope it helps you now.
"Today is not the day that I die."
We can't live our lives years or weeks at a time. Just one day at a time. You have done it before and I think you can do it again. You knew you needed some support and you found it. You are a strong, loving mother. You are "almost" in the same spot you were last summer. You made that be a good year and, one day at a time, you can again.
I've gone on and on. I will be thinking of you and sending loving strength your way as you wait, yet again, for more news. Just remember how strong your love is and that "Today is not the day"
Virginia
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Well said, Virginia!
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