Mothers with school aged children
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Sounds like the winter blues all around. Here's to everyone feeling better soon!
I am doing well following radiation. It took care of my seizures and most of the headaches. So far I've managed to dodge all the the strange bugs the kids have brought home. My 13-year-old feels much better after three days of antibiotic for his ear. It's my 17-year-old who presents a problem. After two weeks of increasingly bad headaches and missing all but one day of school last week, we managed to get him in to the doctor. Answer, she thinks he has mono. Test results back on Monday. I'm going in on Wednesday to get a port put in. I'd like just one week without a doctor visit. I literally spent half the month of January in some medical waiting room.
Well, I've got to get to work. The things we do for our kids. My son is the prop man for the school play (maybe they should look for a new one). This year they are doing The Diary of Anne Frank. So, I am making the diary. I already have the inside pages put together, just have to make the cover. I've just got to get up the gumption to go downstairs to cut the cover to size. It's cold down there and the stairs and I don't like each other.
Enough grousing. The sun is shining outside my window and the bluebirds have already begun to put on their spring colors. They are stunning!
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hello everyone,
Hope everyone is busy doing their lives with kids.
I failed last night to be the tooth fairy for my 6 year old. I concocted a story that they didn't come so she could show her daddy ( he had been traveling) the tooth first (I know not good to lie), so I will be paying double tonight.
My tumor marker is higher again but my last scans in feb were good so oncologist isn't worried. I am, so will see if I can be tested again in 3 weeks instead of 6 yo be safe.
Getting ready for our trip to the Galopagas islands in July.
Not much else is new.
Thanks for the bump stage free.
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hey leftfootforward, good news.. holiday is always good. About the tooth fairy experience, well I'm sıre you made up for it just fine
I have been thinking the main motivators for us in this treatment process are our kids, so this thread is precious to share much.
Last weekend DS (12) represented Serbia in JUnior Model United Nations, and his resolution on disarmament of countries passed! He was so proud, felt so mature and all.. I am not a politics person, yet feel it is good DS is aware of what's going on and has ideas of what can be done.
Since I opened up about my condition last year, he has been quite normal about it, observing my treatment for the last 5 years and that I am still aroumd and with good qol. We talk about death at times, he says it's normal, accepts all will die anyway. I am so grateful he has grown enough to handle things as much as he can. He was just too young when I was dx'ed.
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Anyone have summer plans yet? I am way behind in getting those things set up. My big news is that i just got a job with the school district to be an emergency sub and para-educator. Its nice, as I can pick and choose which dates I work and its all during school hours. Pay isn't great but it is something. It is the first job I have had in over 17 years. Kinda feel like a grown up again. First day is Monday. I realized that people were getting paid for dong the same things I do while volunteering, so I applied. We shall see how it goes. It gives me a lot of flexibility which is great because with treatment I have days where I can't work.
I am also busy doing PTa president things. Somehow, I am doing that again next year. Trying to get a budget together and figure out fundraising. Ugh. Just got done helping with food and clothing drive.
But these are the types of things that keep me going- I live for my kids.
best wishes to all of you
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oh leftfoot! PTA president and a sub!?!? That gives me the willies! Maybe having been in the school system prior...I can't hardly handle school politics anymore. Good reason for me not to be there 😊 I have been trying to figure some way to earn some cash...only thing I'm kind of interested in is pet sitting/barn sitting...but the truth is I still struggle just to keep my head above water at home. I need help. In every aspect. I need help.
This is the first year we have no summer plans. We have no money...so we will be making our own fun. We do have a neighborhood pool so that will be great! I'm sure we will go camping and hiking. Maybe a few short trips. We spent too much money renovating our bathroom. But I'm happy to be here and work on landscaping etc.
Kids are starting baseball and softball! Love watching them play😍
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I just came across this thread and so glad I found you guys! Dealing with this beast while having young kids is the hardest and yet, what keeps me going everyday.
I hope you all, and your children, are having a good day and looking forward to summer (reprieve from homework!!!)
Corinne
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attended my second son's graduation from elementary school today (6th grade). My oldest son is graduating from jr high (8th grade) next week. My two daughters are finishing 3rf and 1st grades. I wasn't sure I'd ever see this day. So very happy and appreciative to be here 6.5 years from diagnosis and 4.5 from mets diagnosis.
Best wishes to you all
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Hello, I'm new here, just upped the antsy last week.
Nice to connect! My kiddos will go into Kindergarten, 4th, and 7th.
I feel awful for them, they want to stay home a lot and I selfishly want them here.
I pray we will see college graduation, is that too much to ask?
X
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it has been a long time, too long, since I posted to this thread. I have not been on the boards as much as I once was...we have lost so many and it’s just really hard and I have been doing well for so long, I try to distance myself for mental reasons...
But, I just wanted to say hi to all you moms out there! My ds was in 3rd grade when I was dx and now he is getting ready to finish up 8th grade! He has played football, basketball, and baseball along the way. Most recently he started on his middle school baseball team and won the “most improved” award! Next week he will be awarded several academic awards including Alpha honor roll for his entire school career! He works hard in sports, but academics come easy for him (must have skipped a generation 😉). I honestly didn’t know if I would see him to high school!
My dd was 18 months and is finishing up 1st grade! She is the sweetest, most loving child ever! She tries so hard at everything! She may not be the best, but you can’t teach effort, and that will take her far in life! She loves to dress up and wear high heels and put on makeup and jewelry and then she’ll turn right around and get dirty cleaning the barn and riding horses!
I am so blessed to have my kiddos! They make every day interesting and worth everything I go through! I’ll post a few pictures and then I hope to see everyone post pics of their precious ones! K? K!
Oh and I became an Aunt in the time since dx!!! Twice!!! Secretly hoping for more nieces and/or nephews! Ok your turn!!
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kjones. Glad to se you posting. Your kiddos are adorable. Glad to hear of their accomplishments and that you were here to see them.
My boys were in 3rd and 5th grade. Now they will be in 10th and 8th grade. Have seen so many great things I never dreamed I would live to see. Am currently loving ds1 is driving and has a car.
Keep strong moms.
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just seeing if anyone still follows this link.
I have been battling this disease since December of 2010. My kids are now 16,14,11, and almost 9.
I am so tired of living with this disease. I have hit a hard patch where I am so tired and I can’t do any of my mom/parent duties. Mynlaubdry snd didhes have piled up, the house isn’t clean.
I want to do these things but need s break.
Hoping others understand.,
Anyway, I am insanely greatful I am still here to see my kids grow up. I pray I’m around a lot longer.
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hey leftfootforward!! I just popped in. I don’t come around very often, but so glad I checked in to “see” you! I completely understand the piles of laundry and dishes...wanting to get it done, wanting to take care of the family like “normal.” It just doesn’t get done as often as it should. I carry so much guilt about things I “should” be doing...but then I have to remind myself to be gentle...be thankful I am here!
Easier said than done, right? So glad you checked in! So glad you are enjoying your kiddos! Be gentle with yourself. Many hugs to you. May you get a respit from the fatigue
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Nice to see you, KJones13.
Sunset
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Hi everyone, I read a lot, but don't post that often. I have come to realize that these boards are so helpful, uplifting and beneficial to those of us with the life-long disease. No one else can understand, try as they might. There is no one else who understands our daily lives. I am thankful that my friends and family don't understand. I would not want them to. So, here I am, posting in here, hoping that someone will be there. I read the last three posts from leftfootforward, KJones13 and ABeautifulSunset. Boy, do I feel part of the club! Why is there so much guilt when there is not much we can do to change our situation? My laundry is sitting in my washer as we speak. The only way to get our house cleaned is for me to do it (which will land me in bed for a couple days) or threaten the kids! Actually, the kids wanted to have some friends over on Saturday and so they cleaned happily! Maybe we need to throw more parties! I hope everyone has a good day, thanks for listening... Oh, and maybe someone can tell me how to insert the highlighted names into my post!
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when did you tell your kids about your Stage IV status? How old were they? We haven’t said anything to the kids because it doesn’t seem necessary right now. Have a good night
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I told my kids after we had a plan for how we were dealing with it. I have always been open and honest with my kids about it. There is 8 years between all 4 kids ( now (16,14,11, 8) at stage 4 diagnosis (10, 8, 5, 2.5). We scale the talk to where they are developmentally and on if they have understood me diagnosis and treatment previously.
Typically the conversations go like this these days
The cancer has become smart and I have to change my meds to something it hasn’t seen before or something it hadn’t seen in awhile. I am doing everything I can to fight it.
I never promise to beat it only that I will fight until I can’t anymore. I then say I am doing well, have great doctors, and are catching any changes early so we can treat it.
Only you know what is right for you and your family. Listen to your gut. There are no right answers.
This disease has effected each of my kids differently including being a major factor in one child’s diagnose depression. We can’t take away all the fear but we/you can do what you think is best for your kids.
You are in my thoughts
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Leftfootforward (and others), how did you approach it with your youngest when he/she was very young? My only child is 4 now and I haven't told him. I was pregnant with him when diagnosed. He definitely sees and notices "things" over the years but doesn't know. He is very sensitive in some ways - in touch with his and others emotions, empathetic and he may just understand too much, without having the context of life to put it in perspective. Things are black and white - good or bad, scary or not scary, etc. He asks me a lot of questions about death and wants to know what happens to people after they die, where Jesus is now and how God exists if he was never a person. Explaining that they are in heaven doesn't cut it with him. If he were less clued in, honestly, it might be easier. I am very good at "spinning" a positive, yet honest (but mostly positive) picture for my other friends and family but that won't work for him. Nothing gets by him. I did try to mention at one point when he was 3 that I may not be around forever and he told me that was an awful thing to say and really hurtful that I would ever leave and why would I say that to him. It totally backfired. I felt like the worst parent in the world. He thought I was telling him I may pick up and leave him some day on my own volition (especially if he didn't behave well). I couldn't properly steer the conversation back on track without jumping off the deep end which I wasn't ready to do and would have been too upsetting based on where our conversation ended up.
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JFL- I’ll think about it.
The funny thing is that I have had to have this commtyoe if conversation several times because of the age spread of my kids.
My girls were too young to understand on my initial diagnosis (3 months and 2.5) and still too young on my metastatic diagnosis 2 and 4.5. I lived for almost 5 years at NED do the girls didn’t have to really think about it. Recently about s year ago my cancer cane back and had been not stable.!ive been through several drugs, lost my hair again, and am doing weekly Chemo. they are now the ages my boys were at my metastatic diagnosis. They are old enough to understand. So I had basically as the same conversation I did with my boys son 2012 again.
Let me think about what I said to my boys all those years ago. I’ll get back to you.
Liz
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LuvMyFam - I came on this board looking for that exact conversation! Thank you for asking the question about how we tell our kids.
My answer turned out so much longer than I meant, but it was therapeutic to write, so I'm leaving it.
I told my 15 year old stepdaughter the news when everyone (doctors included) assumed I would be stage III. It would have been hard to hide from her that I had cancer, and she immediately asked me about the stage. We told her that there was a very small chance that it would be stage IV based on the bone scan, but that the doctors had assured us that was unlikely. She found out I was stage IV in the worst way. I was in the hospital with a chemo port complication when I got my bone scan results. My husband called his mother who took the call sitting right next to my stepdaughter. She overheard everything, including my husband's incredible distress. I found out she knew because I got a text from her that simply said, "I love you." It was the first time she ever said those words to me, even though we have a great and loving relationship. I've been there for half of her life. We found out from my mother-in-law that she was angry because she felt like we'd been hiding how serious it was from her. But the truth is that my whole medical team is shocked. All other indicators (markers in my blood, my CT scan, lack of any physical symptoms/pains) suggested the bone scan was simply a formality. Up until that scan, everyone told me I would probably live a full and normal life after chemo and surgery, growing old as planned. My husband sat my stepdaughter down that night and had another conversation with her about it. I've told her that I likely have many years, that medical improvements are happening all of the time, and that my biggest motivation to fight to stay alive is being there for her. She seems to be handling it okay, but we really don't know. My husband thinks he has heard her crying in her room a few times. I think we need to keep talking with her about it, but it is hard when we're both struggling so much emotionally with the news.
My mother was diagnosed with a fatal disease (an autoimmune disease) shortly after my birth. She was given 6 years to live and made it twelve years. Yesterday was the 27th anniversary of her death. My family never hid from me that she had a fatal disease and that we didn't know how long she had left. I remember always knowing, even as a really little kid. I think it helped me cope.
And for those of you with young kids -- I turned out fine. I love my mother very much. I wear her wedding ring as my wedding ring. I have never doubted the strength of her love for me and knew without a doubt that her love for me and my sister why was she fought so hard. She is with me in my heart and spirit every day.
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oh wow! I’m sorry I have not checked in sooner! Ellientta, thank you for sharing! That took my breath away...
That is one of my biggest fears...devastating the ones I love the most in this world...and wanting to make sure they will be ok. I know I won’t be the first mother to die and leave young children and I won’t be the last. But it’s still really hard to process.
JFL, my son was very similar to yours but older at the time of diagnosis. He was 8. I don’t think I ever used the term stage 4 or even tried to explain what that meant...gosh it’s been so long now my brain can’t remember! Stupid drugs! I know I was as honest as I could be and I have always said that he will be the first one to know when anything with my health changes. He has always been the kid who likes to know things in advance. He doesn’t like surprises. He likes to have a plan. My daughter, on the other hand. Can’t handle being told anything ahead of time because she obsesses over every detail.
Will have to write more later. Phone is being at
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I was diagnosed De Novo (bone mets) in Jan at 42 with 13 years old son. We just decided to tell our son today after a good scan result last week. He seems to handle it ok right now, but we still worry. We waited until today to tell him because we wanted him to finish the school year without problem.
For those who already told your kids, can you share about how the kids reacted & handled to the news? What should we watch for in term of of his emotion? Thanks for your thoughts & advice
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42young- I have ; kids and each one has responded differently. I would watch for mood changes, lack of interest/motivation, isolation. You know you’d kid best. During school I watched for assignments not turned in, late work, or dropping grades.
My kids were 8,5,2.5, 3 months at diagnosis. Now they are almost 17, 14, 11,and almost 9. At various times and various stages of treatment we have had to re-explai things.
It is hard to know our health affects our kids. I have found however it also shapes them in ways I never expected.
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I don't have young children anymore, our last one just graduated this year. Big deal for us. I just wanted to say I think all of you are seriously amazing women.(and perhaps men even). I don't know if I would be able to be as strong as you all obviously are. I am so sick of cancer and everything about it. I started from the beginning and when I saw Romansma, I almost fainted. That was one hell of a woman. I had just started coming around the boards a little while after that ibrance thread became a huge monster. I didn't know her very well, but what I do know. Is I can feel her feelings as I read them. Even though my kids are grown. I still see those chubby little fists. I hope hope hope that each and every one of you and you wonderful families kick some major ass and survive the hell out of this freaking cancer. Your families are precious and so are you all. I admire each and eveeyone of you! The strength, the determination, truly something. May your days be filled with children's laughter and joy. Breathe it all in....because one day you blink and they are walking across the stage accepting that diploma. (Even if we didn't have cancer.. Time is fleeting). Many hugs for all! ☮️ And 💜 to you all.
Taraheel?? You still around beautiful friend? Haven’t seen you!
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Thank you Leftfootfor & Micmel. To be honest, telling my son is the hardest part of my bc journey so far. We kept debating wether to tell him or not. Lucky that I have been on Ibrance with managable SE's, so we have time to think about what & how to tell him.
I just started this journey 6 months ago & i can feel the pain of those mothers who battling this horrible disease along with raising young kids. I admire all of you for your strength & determination. I hope to be here to see my boy walking up the stage to receive his HS diploma. This is my goal for now.
Thanks again
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42young~I was diagnosed denovo at age 45... liver... bones... 13 out of 35 nodes filled with it. Bad bad. Has surgery, removed liver tumor, liver resection, brutal, had 13 chemo treatments, 4 AC and 9 abraxane. Kicked my rear end to no end. Reached NED for three months. Came back in bones...Started ibrance. I am now NEAD and have been for 3 years now. I am starting my 33 month of ibrance this week. It's a wonderful drug. Fatigue yeah. Life. HELL YEAH! You'll see him sweetheart, you will!
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I remember when my goal was to live long enough so my newborn and her sister would actually remember me. Then it was to live long enough to de my youngest graduate from kindergarten. Obviously I hope to live long enough to see her graduate from HS. That isn’t so far away yet it seems like a lifetime.
May we all be able to see our children achieve great things.
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Thanks Micmel for your encouragement. I hope Ibrance will work for us for a long time.
Leftfootfor, let hope for all of us to see our kids graduating from HS at least!!
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