Mothers with school aged children
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Cita,your children are really young. You could probably get away with just telling them your cancer came back and, like 5 years ago, you are going to have treatment so you can get better. My children were 10 and 14 when I was dx'd. I told them I have cancer and they saw me go through chemo and get lots of community support. They've also see me recover from chemo and surgery and grow my hair back.i no longer appear or act sick, so life is normal for them, as it should be. I'm still here almost 5 years later (with bone mets). I cannot imagine them having to live those last 5 years with the fear of losing their mom hanging over their heads. They have enough to worry about growing up. I'm glad I did not scare my children. One is now in college and one is in high school. At this point there is no reason to think I won't be around another 5. They still don't know I am stage 4. Heck, most adults don't even understand what that means.
Btw, they asked me if I was going to die and I said no. And until someone tells me I'm dying, as in soon, I will not put that thought in their heads.
Stefanie
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To add to my previous post: I was diagnosed at stage IV, and having lost a 39-year-old family member to cancer, my kids definitely do ask. We don't use the term stage IV. My daughter has asked me to promise I wouldn't die from this. It's hard to look in that little face. She wants a black and white answer and there is a lot of gray. I try to focus on reassuring her (and some days myself) of how competent and confident my medical team is and that when I'm not feeling well it's usually side effects from treatment, not the cancer itself. Whenever a parent dies in a movie, I hold my breath for the questions that usually come. But most days feel pretty normal. I just had my last taxotere, so hopefully normal will become the norm.
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Bluefrog, Congrats on your last taxotere treatment. Hopefully things are about to get A LOT better for you now. We also had a 44 yr old relative lose her life to bc a year before my diagnosis, so yes, my kids were concerned too. I think you'll find as you have less side effects and appear more "normal" to your kids, they may just forget you have cancer...at least for periods of time, which is a healthy thing for them. I still deal with SEs and I'm always getting my shots and my tests (usually they are in school) so it doesn't impact them too much.
I grew up in Philly, first in King of Prussia then in the Northeast (Welsh and the Boulevard). Still have relatives there in Havertown, Bluebell and drexel Hill.
Stefanie
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Stefanie: thank you! It is so helpful to hear from you, especially when you are doing so well. We live in Cherry Hill, NJ, the other side of the river.
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hi Cita, I was diagnosed mets to lung in sept 2015. I am a single mother with very little family. My daughters father has no contact. I did tell my daughter that the cancer is back(previous diagnosis in 2011). I did not tell her any details just I am going to fight it just like I did last time. She was 9 when I told her as she just turned 10. I am her entire world and she would be devastated if she knew the specifics. I too am worried a about her learning more from others but I need some support so I have told people and told them to please not talk about my stage or anything specific as My daughter only know I have cancer and I am fighting it. This is what is best for us but I totally agree each family needs to determine what is best for them!! Good luck with what you decide. Very tough stuff!
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This is an issue I have thought about a lot. I'll say what I decided to do in my particular circumstances, and I totally support others whose decisions differ from mine. We all know our own kids best. I feel similar to what Stefajoy described, not wanting my kid to live with the fear. As long as I am doing well, I would rather we just enjoy our time together. I don't think honesty means you have to tell everything. So only three people know about the stage iv, and they are sworn to secrecy. I emphasized that no, they can't tell just one or two people, because that is how things get passed around. As Cita said, if people talk, my kid will clue in. I miss out on some support with this arrangement, but it is worth it to protect my kid. If things start to look bleak for me, then it will be time to explain about stage iv. If my kid asks, I will not lie. But it is true that nobody knows my future. Since one of my mets locations was breast, my kid and other people just assume it was a local recurrence, which is oddly convenient.
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I don't know whether this resource would be of use to any of you, but wanted to share it "just in case" –
Sending warm hugs for the mothers here, Stephanie
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thought I would try to revive this thread. I know many of us have school aged children. Wondering if anyone else uses counseling for their kids. Since dx almost 3 years ago I've seen such a huge change in my dss. I thought it would get easier but if anything it's harder. Having s problem with anger and finding a good release for it and also getting them out of the house without me. Last week the counselor came and just did history/paperwork. Today he just played board games to get to know each other better. So hoping this makes a difference for our whole family. Cancer changes so much in our lives. Where oh where did normal go ? Also it's been spring break here this week. Anybody else have kids on spring break ? Any fun ideas of what to do that don't require alot of walking? We've went o the movies. They played laser tag and went bowling one day. I am all out of ideas for a 10 &14 year old
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Patty
Thanks for bumping this thread. I have used counseling through out my kids lives. Back in 2011 when first dx it really helped my daughter who was 14.
I love food activities for kids making pizza with store bought crust or making ice cream sundays. Sometimes I would use long vacation says to play give away, keep and throw away with old toys, books and clothes. My daughter is in college and just did this with her best friend and told me how fun it was.
Mary
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I tried the counseling route, but I think my dd (13) just internalizes. I know she talks to some people at her church and school. I try to keep her busy and active, but every morning, before it's time to get ready for work/school, we cuddle!
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we tried counseling when dd 13 was 10. It was a disaster. My dd refused to speak at all to the counselor and turned her back toward her. The counselor then proceeded to talk to us as if I were about ready to die........I had to break in and repeat that my treatment was working, we just wanted a place to talk about things as a family. It was a total failure on all accounts and I am sure my dd will be reluctant to talk to another one in the future. I am sure there are good ones out there, I considered talking to the school counselor since dd changed schools and now none of the staff know about my diagnosis. But for now while things are ok I think we are just not bringing it up. If the kids have questions I will answer them, and they know I take meds and go to the dr every month. And I am no where as active as I used to be, but that has kind of become normal. It's a hard road anyway, but I worry so much about my children.
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I am thankful that I found this thread here. I am also super sad that so many moms with young kids are battling with this dreadful disease.
My wife's Stage 2B cancer metastasized to bones on 29th Feb this year. Since then she has been been sick with bone pain. Now the pain is much better (with 10 rounds of rads) but the rads to her pelvis is causing her to have pretty bad diarrhea. Hope that will resolve soon and its nothing else more ominous.
My daughter is 9 yr old and has no clue. My heart breaks looking at her and she is super close to her mom.
I can not imagine a world where she grows up without her mom. It will totally devastate her. What happens if something happens to me too. All these thoughts are driving me crazy with fear.
I have faith in God but I do not know why good people are punished this way.
My wife is 40 yrs old and will be starting with Ibrance + Letrozole hopefully any day now.
Prayers for all of you brave ladies.
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well my youngest is now almost 6 ( was 3 months old when initially diagnosed) and my oldest is 13. Two in the middle are 8 and 11.
My 11 year old is having the hardest time. I think it's because life with cancer is all he knows. He was just beginning to understand death when I was diagnosed. He is seeing a counselor and will be evaluated by psychiatrist in April to see he needs to be medicated.
My 13 year old is doing ok, he was old enough to process my cancer upon initial diagnosis. He has his moments but has taken this as an oppertunity to be stronger.
My two littles were too young to rally understand things and are doing well.
Life goes on in our house.
I admire how my kids thrive despite the hand they have been dealt.
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I have school aged kids as well. My youngest is 6, then I have a daughter who is 8 ( but she doesn't live with me, I had her for a gay couple but she knows I am her mother and she knows what is going on) then I also have a son who is 10 and a daughter who is almost 12 and again I had them for a gay couple and they know I am their mother but I don't know if they know what is going on, their fathers do, but I unfortunately don't get to see them as much I as do my younger daughter, then I have a step son who is 16, my son who is 16 and my oldest son is 19. So each kid has responded pretty well (the ones I know, know) my oldest boys understand what stage 4 means, they get that there is no guarantee I will be around for a long time, but they are hopeful that I will respond well to treatment and stick around for as long as possible. My step son doesn't quite understand it. He has autism and while he is doing very well, he just doesn't quiet get the gravity of it all. The youngest two just know I have cancer but they don't know that it will never be cured. My youngest boy thinks if I eat enough broccoli I won't have cancer. Thanks stupid commercials.
We have not done counseling and really haven't done much of anything outside of treatments. I feel very good, I show no symptoms so I really just let them live their lives. We make tons of cancer jokes, but I think that is how we all cope, make light of things, even though we all know the gravity of it all.
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I just wanted to add with my daughter she went through 2 counselors that did not work but the third was a charm. I am glad she was willing to keep trying.
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My daughter sees the guidance counselor at school for check-ins weekly. For now, I don't want to do more therapy for her, but I probably will down the road.
Patty- can you have DH buy the boys Legos or building craft ideas? That will keep them busy for hours. What about an indoor gymnastics class for them and you just watch?
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My DH gave a cruise as a gift to me and my son (his stepson) for spring break. I get car sick easily and was worried about seasickness, but I wanted some quality time with my son. I knew if I felt sick he could roam the ship alone and be safe. (He's 17.) I had no seasickness and the cruise was fantastic. Several nights I went to bed early and he stayed up. We both love to travel and I treasure our time. He's off to college in August (only half-hour away) so I'm savoring every moment. I guess I'll age out of this thread. Almost 5 years with Stage IV. ... My cancer has NOT been a negative in my relationship with my son. I don't always physically feel great but I always have love in my heart
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So glad you could enjoy such quality time with your son and family. I am sure one of these days you will be going on a cruise with your grandchildren as well.
Just curious,what was the location of your mets ?
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Tarheel, your cruise sounds amazing! What a special opportunity with your son. Where did you go?
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Tarheel, what a fantastic gift! So glad all went well. Love that you will age out soon. You could start a thread for moms with college-age kids.
DD is 16 and we have spring break next week. We will be doing some hiking and biking in the mountains. Yes, we are a long way from the days when her friends in kindergarten were convinced I had lice because I always had a scarf or hat on. Life goes on for DD but when things get stressful in school, I notice she thinks more about the what-ifs and has a harder time (re-)processing it all.
Patty, hope you are on the road to recovery. Thinking of you.
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Heidihill, I hope you have a wonderful spring break hiking trip with your daughter. Nothing like being outdoors.
JFL, we went to Cozumel and Key West. First time in Key West. It's a great town for a cruise port, plenty to see and do right by the dock.
Letmywifelive, I have plenty of mets. Lungs, lots of bones (ouch), skin. There is plenty of hope too
Might have to create a college kid thread. I have joked that I hope I live long enough to have grandchildren, but please don't have them right now.
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Hi Michelle, when you were first diagnosed in 2008, were you prescribed Tamoxifen ? Thats what was given to my wife and then she had mets within 2 years. Now she has been prescribed Letrozole + Ibrance. Since Letrozole and Tamxifen are both anit-Estrogen based therapies, I am wondering if resistance to one automatically means resistance to the other.
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Letmywifelive, I refused Tamoxifen after my Stage I treatment in 2008 (no regrets, would do it again). Resistance to one drug does NOT automatically mean others won't work. Nothing is automatic with breast cancer treatment. LOTS of women with mets respond great to one but not another. And over time, one's response can improve. It's possible that a few years down the road, and I hope there are many for your wife, Tamox can be used again.
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Thanks Michelle, I appreciate your response.
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Hi ladies,
Regarding counseling, my 10 yo DD sees a therapist, attends a group at school, and goes to art therapy with my DH. She's been seeing her therapist for several years for other issues, so I am glad she has someone she can trust to speak with.
I heard about the group at school from another mom with cancer. When my DD started I asked if she met my friend's son. She said that there were so many kids with a parent who was sick that they had to split the group. That makes me sad, but ever so thankful that the school provides this support for the students.
Thanks to all who have shared in this thread. It's really helped to remind me that I'm facing a marathon, not a sprint.
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noni--glad your daughter has supports in place. It is sad there are so many kids with sick parents. I believe one stat says 1 in 20 children will loose a parent by the age of 16, maybe 18. Can't remember exactly. Loss is loss, but dying in an accident and dying slowly from a disease are pretty different experiences for families. Even the ages of the children must make a difference in how a child processes loss.
Tar Heel--so glad you got to go on the cruise!!!! Sounds like you two had a great time! What an awesome gift! So he has decided on a college? Good for him. Glad he found an interest in school again!
I just want to tell you momma's out there to hang in there. You are doing a great job! Your kiddos love you! And we love and support you through the fun and not so fun times! Always in my heart
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I finally caved and got an appointment to see a psychologist for my son. They said he definiatly is a candidate for meds. He is depressed, has anxiety and might suffer from ADHD and OCD. Talk about winning the lottery. Not. I am glad I sought help when I did and see a future for him. I am so sorry that half of his life he has lived in fear of death/loss due to my diagnosis.It really has shaped who he is.
On a brighter note, I am taking the family to Ireland this summer for 3 weeks and The Galapagos Islands the next summer (2017). Life is too short and I want to enjoy seeing the world with them. That and my eldest will have graduated from jr. High and the middle son elementary school in June of 2017. So thankful I can think about doing these things with them. My youngest daughter is almost 6, which amazes me as she was 3 months old when I started this thing. And my middle daughter has grown into such a wonderful soul.
So blessed to have had the time to see my kids grow up the past few years. Looking forward to many more years with them.
May we all be able to see the milestones that we want to.
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I read this today and it nearly broke my heart. It's not enough to love them while we're here, we've got to prepare them for when we're not.
My goal has always been to raise my daughter to be kind, confident, and independent so she'll be prepared to succeed at life, whatever she decides to do. This makes it extra tricky.
Hugs to all the other moms of school aged kids.
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Happy Mother's Day! I hope you have a day filled with love
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HAPPY DANCE! While at Sloan-Kettering in May, I read a newsletter story about the hospital's "Dream Team" that helps make wishes come true for patients. The story said that wishes were not just for dying patients, but for anyone with a milestone to celebrate. I've been travelling to NYC every 2 weeks because of a clinical trial. I talked to my social worker about a celebration for me and my son, who graduated from high school and is headed to university in August. We used to live in NYC. I didn't have any ideas about what to do that would be special; my son and I love the simple things about New York -- Central Park, a burger from Shake Shack. I found out yesterday that we are going to NYC next week, all expenses paid, and will be VIP guests one night at a taping of the Tonight Show with Jimmy Fallon.
I couldn't afford a big gift for my son for graduation, and I'm thrilled and grateful to have this time with my son (while also getting treatment and tests at Sloan-Kettering).
Here is a photo of us at graduation. (I'm disappointed that his father didn't attend, but I'm happy to be married to a man who serves as a fine father, supporterand role model for my son.)
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