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Topic: Mothers with school aged children

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Apr 6, 2014 03:03PM - edited Apr 6, 2014 11:09PM by Kjones13

Kjones13 wrote:

I know this diagnosis stinks, no matter age or what phase of life you are in. I was hoping we could start a thread for mothers of school aged children. 

Edited to say: and younger...forgot to include my 3 yr old!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 6, 2014 04:14PM RosesToeses wrote:

KJones, thank you for starting this!  My daughter is a 14yo freshman in highschool now, she was 12 when the great BC "adventure" began.  She's a great help and puts on a brave face, but I know this is really, really hard for her.  She shares her fears with my husband, but not to me (I think she doesn't want to upset me).  I also have grown stepkids, which is hard for them but a blessing also because all the kids (step and my daughter) are very close and they are there for each other.  

Looking forward to supporting each other in this area.  It is absolutely the worst part of being stage IV for me, knowing how sad it makes the kids and not being able to fix it, and I'm sure for many others of us as well.

(age 42 at dx, lived to see 47 and counting!) my blog: mepluscancer.blogspot.com, Xgeva 2/27/14, Lupron 4/10/14 Dx 4/2012, IDC, 3cm, Stage IIIA, Grade 3, 7/9 nodes, ER+/PR+, HER2- Surgery 6/15/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 7/17/2012 AC + T (Taxol) Radiation Therapy 11/26/2012 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/27/2014, IDC, Stage IV, metastasized to bone, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 3/23/2014 External: Bone Hormonal Therapy 3/25/2014 Faslodex (fulvestrant) Dx 4/1/2015, IDC, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2- Hormonal Therapy 4/1/2015 Femara (letrozole) Targeted Therapy 4/27/2015 Ibrance (palbociclib) Targeted Therapy 10/16/2015 Afinitor (everolimus) Hormonal Therapy 10/26/2015 Aromasin (exemestane) Chemotherapy 12/4/2015 Xeloda (capecitabine) Dx 8/3/2017, IDC, Stage IV, metastasized to bone/liver/lungs Chemotherapy 8/6/2017 Gemzar (gemcitabine), Taxol (paclitaxel) Chemotherapy 11/12/2017 Halaven (eribulin) Dx 11/13/2017, IDC, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2-
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Apr 6, 2014 06:31PM Fitztwins wrote:

I have twin boys age 13. they are in 7th grade. They have lived with me having cancer since the age of 4 (When I was first diagnosed @ Stage 3c).

My philosophy is not to let my cancer affect my son's childhood as much as possible. I want them to have a normal life. I think we are doing pretty good.   I think they are well adjusted normal boys. The stuff they worry about (friends, grades, bad haircuts)...

When the time comes that we have run out of treatment 'options' then we will have the talk.  

Janis

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Apr 6, 2014 06:42PM kebab wrote:

My kids are 8 and 11, in 3rd and 6th grade. My daughter starts middle school in the fall.  They were 2 and 5 when I was first diagnosed; and 6 and 9 when I arrived at stage iv.  

I feel similar to RosesToeses -- the hardest part is knowing the effect all of this is having on the kids and how it will affect them to grow up without me. I could be so much more zen about this "journey" if I wasn't so worried about the damage I'm causing them. 

It's difficult for me, too, because their bio father is... well, let's just say we parted ways for very good reasons. They have a wonderful loving step-father, and it destroys me to think that the courts could very easily rip apart the home they have now and force the kids to live with their bio father. My goal is not to see them reach a certain grade or graduation -- I just want to be around long enough for them to reach an age where they will be able to choose who they want to live with after.

Stay-at-home mom to 13-yo daughter and 11-yo son. stage iv, node and bone mets; 03/2013 liver mets; 05/2016 brain mets; hospice care. Dx 4/22/2008, IDC, Left, 2cm, Stage IIB, Grade 3, 1/11 nodes, ER+/PR+, HER2- Chemotherapy 6/14/2008 AC + T (Taxol) Hormonal Therapy 11/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/14/2012, IDC, Stage IV, metastasized to bone, mets Chemotherapy 8/14/2013 Xeloda (capecitabine) Chemotherapy 7/21/2014 Carboplatin (Paraplatin), Taxol (paclitaxel) Dx 11/3/2015, ILC, Right, 6cm+, ER+/PR-, HER2+ (FISH) Targeted Therapy 11/27/2015 Herceptin (trastuzumab) Chemotherapy 11/27/2015 Gemzar (gemcitabine)
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Apr 6, 2014 07:02PM in_cognito wrote:

I have a two daughters, one is in Kindergarten and the other in preschool. I was just diagnosed with mets in February after being stage 1 just 4 years ago. Still trying to wrap my head around all this. Debating if I need to start writing letters to them. Some days I think I will live forever, and days where I'm wiped out makes me start going down that rabbit hole. Anyways glad you started this thread. 

Dx 4/30/2010, IDC, 1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 7/26/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2010 Surgery 11/19/2010 Mastectomy: Right; Prophylactic mastectomy: Left Dx 2/19/2014, IDC, Stage IV, Grade 1, 0/0 nodes, ER+/PR+, HER2- Chemotherapy 3/7/2014 Xeloda (capecitabine) Chemotherapy 5/15/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/15/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/3/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2014 Herceptin (trastuzumab) Targeted Therapy 9/22/2014 Perjeta (pertuzumab) Chemotherapy 9/23/2014 Taxol (paclitaxel) Chemotherapy 1/12/2015 Gemzar (gemcitabine) Chemotherapy 2/21/2015 Halaven (eribulin)
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Apr 6, 2014 07:32PM brandall wrote:

I have a daughter in second grade and a son in preschool.  The thought of leaving them is definitely the worst part.  It's awful.  I've thought about doing letters or videos, but how do you put a lifetime of advice in letters, where do you start?  It is all so overwhelming and just thinking about starting a letter makes it so real :(

Brandi - Mother of 2 - Daughter age 6, Son age 3; Liver mets Dx 7/24/2012, IDC, Stage IV, Grade 3, 7/17 nodes, mets, ER+/PR-, HER2- Surgery 8/1/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/10/2012 AC + T (Taxol) Radiation Therapy 1/20/2013 Breast, Lymph nodes Hormonal Therapy 2/28/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/19/2013 Prophylactic ovary removal Hormonal Therapy 2/20/2014 Femara (letrozole) Hormonal Therapy 5/30/2014 Faslodex (fulvestrant) Targeted Therapy 4/8/2015 Afinitor (everolimus) Hormonal Therapy Aromasin (exemestane)
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Apr 6, 2014 09:38PM raro wrote:

I have 2 adult kids (one married) and a 12-year-old son. They all live with me. I'm grateful to have them, but my youngest often feels like he has 4 parents. He has been dealing with my cancer since he was 4. His dad died when my son was 5 months old, so he is doubly afraid of losing me, as well. 

We stayed up late last night talking about the seizures I've had, because I know it scared the wits out of him. We talked about post-traumatic stress, which he has, and that it's okay to be afraid, but we don't want to live our lives in fear. I am glad that he has older siblings to take him to soccer games and all that, but I miss out on so much. But I try to make up for it by cuddling together in the evenings and letting him tell me about his day. We sometimes joke about my mastectomy or my baldness. Like today, we were looking for D batteries, and I peeked down my shirt and said, "Well, I have a double A!" and my kids cracked up. Or when I got my first wig, my kids all tried it on, taking pictures and putting it on the dog and cat.  If we don't laugh, we'll cry, so I try to laugh as much as possible. 

I try not to think about how devastated he will be when I pass on. I am hoping to live long enough for him to be an adult, but who knows? I try to be grateful that I have lived as long as I have. I remember when my husband died, I was crying to my sister in law that our son would have no memories of his father, and that broke my heart. Her response was, "We will give him memories." It was such a comforting answer, and she has followed through, making sure to mention stories about his father here and there. I hope I live long enough to provide a world worth of memories for all my kids. . 

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Apr 6, 2014 10:02PM CarlaK wrote:

Cancer and middle school-not a good combination! I was diagnosed a year ago and after the initial shock my 11yo daughter and now 14 year old son seemed to do well (we have not had the "what does Stage 4 truly mean" talk yet-saving that for when I have progression) But this first middle school year has been tough on my daughter. She's very clingy and anxious, and it got much worse after I was hospitalized for an infection out of the blue before Christmas. I'm actually well enough to be back to work and back to some of my previous professional activities now requiring a little bit of travel-and she hates it! Luckily I got a recommendation for a great therapist who has been helping us and I'm just trying to be very patient with her. I'm crossing my fingers that I stay stable for a stretch so she can keep working on skills to manage her anxiety.

I worry that while DD is very vocal about her fears, DS is totally the opposite. I hope that when he goes through tough times he will reach out to us.

 I haven't written any letters/made scrapbooks or done anything tangible like that, I guess because that would mess up this nice denial we have going :) 

To me, the pain of seeing my kids, my husband and my parents so upset is easily the worst part of my cancer experience so far. But if we love and are loved, there is no getting around it.

Dx 2/28/2013, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2+ Targeted Therapy 3/21/2013 Perjeta (pertuzumab) Targeted Therapy 3/21/2013 Herceptin (trastuzumab) Chemotherapy 3/21/2013 Taxotere (docetaxel) Surgery 8/15/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/28/2013 Radiation Therapy 9/30/2013 Lymph nodes
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Apr 7, 2014 12:19AM Kjones13 wrote:

I have mentioned this before but will again...two non-profits that you all might want to check out. 1. Inheritance of Hope--they serve families who have a parent with a life-threatening illness by sending them on an all expense paid retreat to either NYC or Orlando. Not only do you get to make memories with your children, but there is also counseling groups and an opportunity to make a legacy video. 2. Little Pink Houses of Hope--they serve families with breast cancer, any stage. They also send families on retreats (mainly east coast destinations). Everything is paid for except transportation. There is no counseling aspect to this retreat. They also offer couples retreats.

If you have questions you can pm me. I went to Orlando in may of last year with inheritance of hope. Changed my life. My husband and I will be going to St. John USVI this may for a couples retreat. 

Sometimes, I think they kids feel just as isolated as the parents. That's what I appreciated about the retreat mentioned above. My son was with other kids going through the exact same situation. Luckily, one of those kids is close by, so they can hang out!

Just wanted to share these resources.

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 7, 2014 01:19AM SusaninSF wrote:

So glad someone started this!  I was going to do it myself but didn't get around to it.  I have a 19 year old daughter and a 16 year old son.  I'm particularly worried about my son who is a Sophomore in high school.  He is already very sensitive and easily down in the dumps.  I think it's difficult to figure out the effect my diagnosis has had on him versus his other issues.  He says he's really more worried about his high school, non home issues and I think this could be right.  I had some great news after my lung biopsy and that didn't seem to lift his spirits at all.  Some people have mentioned on the board that sometimes teenagers are more worried about being embarrassed in front of friends by Mom's cancer look than anything else.  I can see that happening.  Teenagers can be extremely ego centric.

I made an appointment with a Therapist for him on Tuesday but we pretty much have to force him to go.  He was worried that someone would see him going to the appointment and worried that it would be a really awful hour.  I told him, it probably won't be fun but we want you to have someone you can talk to because the situation will get tougher.  Perhaps because I look and feel pretty much the same at this point he doesn't really understand.  I've had early stage BC when he was 2 and then again when he was 8 but I got better so I'm not sure he understands that this is a much graver situation even though I have explained it to him.  Also, he was so young those other times, I doubt he understood much of what was going on.

The other thing I think about which is sad and comforting at the same time is that children are ultimately very resilient.  I unfortunately know multiple families who have experienced the death of a parent and as sad as it is, life does go on.  In particular, young children seem to do very well.  Of course, everyone is better off without a deceased parent but I don't think most of us need to worry that our children will lead unhappy lives because we are gone.  I hope this doesn't sound insensitive.    

Mets to brain, lung, eye, femur bone. Currently on Sacituzumab Govitecan TROPICS-02 trial. Dx 2000, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 8/31/2000 Lumpectomy: Left, Right; Lymph node removal: Right, Sentinel; Reconstruction (right) Dx 2008, DCIS, <1cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 3/2/2008 Mastectomy: Right Dx 3/29/2014, 4cm, Stage IV, metastasized to brain/bone/lungs/other, Grade 2, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 3/31/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 4/28/2014 External: Brain Chemotherapy 10/30/2014 Xeloda (capecitabine) Radiation Therapy 1/8/2015 External: Bone Radiation Therapy 6/6/2016 External Hormonal Therapy 11/16/2016 Faslodex (fulvestrant) Targeted Therapy 12/21/2016 Ibrance (palbociclib) Radiation Therapy 11/27/2017 External: Brain Hormonal Therapy 8/21/2018 Femara (letrozole) Targeted Therapy 8/21/2018 Piqray (alpelisib) Chemotherapy 4/23/2019 Taxol (paclitaxel) Chemotherapy 6/19/2019 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 10/23/2019 External: Brain Immunotherapy 10/25/2019 Targeted Therapy 2/18/2020 Trodelvy (sacituzumab govitecan-hziy)
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Apr 7, 2014 03:34AM Heidihill wrote:

Maybe children are resilient because they are so egocentric.

I think my 14-year old daughter has come to the conclusion, too, that she will be OK. A few weeks ago she told me that whenever I decide it's time to go, to not worry about her and just let go. Just out of the blue. It's probably easier to say this when she knows I'm not dying yet and may be around a while (after 6 years NED). But she has thought about the subject. Sad about that but nice of her to reassure me. She's had to deal with my BC since she was 7.

Dx 8/2007, IDC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 2/19 nodes, mets, ER+/PR+, HER2- (FISH) Hormonal Therapy 3/24/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Apr 7, 2014 05:05AM PattyPeppermint wrote:

so glad this thread was started !!!

I have 2 boys age 8 and 12.  I totally agree that just seeing the fear, the hurt, in my children's faces has got to be the toughest part.  Wondering how this will affect them long time?  Will my dh remarry   And my children call someone else mom ?     I wouldn't mind at all I want them to be happy but I so want them to know how much I loved them , wanted them , watched them sleep just trying to suck up every available minute with them.  I know my husband will keep reminding them but will a new mom take down my pics, letters Etc?   Better not!!!! 

To God be the glory! Live, laugh, love... Life is way too short. Dx 6/2013, Stage IV, ER+/PR+, HER2- Hormonal Therapy 6/28/2013 Femara (letrozole) Radiation Therapy 7/4/2013 Bone Hormonal Therapy 7/31/2015 Faslodex (fulvestrant) Targeted Therapy 7/31/2015 Ibrance (palbociclib) Chemotherapy 6/30/2016 Xeloda (capecitabine)
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Apr 7, 2014 05:24AM - edited Apr 7, 2014 05:24AM by RosesToeses

Kjones, about those retreats, were the other sick parents visably very ill or mostly doing ok at the time?  For now, I'm living a basically normal life and I'd be a little bit concerned that my daughter (14 yo) would find it really stressful if she had that kind of visable reminder of what the future (hopefully distant, but who knows) may look like.  

For those of you who have had counseling for your kids, how did you find a good councilor and how did it help you kids?

I'm having so many "yep, know that so well" moments reading this thread.  I hope the resiliency is true.  I know it would hurt my daughter a lot but I like to think she would end up ok.  I find a lot of comfort in knowing that if I don't make it that long, her grown-up sister and also her sister-in-law will without a doubt be there for things like wedding dress shopping and pregnancy and all the other things like that that I want to be ther for.

You can add me to the list of people who haven't done any letters or videos or things like that--I agree that it would totally mess with my denial and probably frighten the heck out of the kids.  I tell myself I'll have plenty of time to deal with that kind of thing when they tell me there's progression and I don't need to deal with it right now.  But, having said that, I totally do things with the idea so that they will be good memories, just without calling them "when I'm gone" sorts of things.

(age 42 at dx, lived to see 47 and counting!) my blog: mepluscancer.blogspot.com, Xgeva 2/27/14, Lupron 4/10/14 Dx 4/2012, IDC, 3cm, Stage IIIA, Grade 3, 7/9 nodes, ER+/PR+, HER2- Surgery 6/15/2012 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Chemotherapy 7/17/2012 AC + T (Taxol) Radiation Therapy 11/26/2012 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 1/9/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 2/27/2014, IDC, Stage IV, metastasized to bone, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 3/23/2014 External: Bone Hormonal Therapy 3/25/2014 Faslodex (fulvestrant) Dx 4/1/2015, IDC, Stage IV, metastasized to bone/liver, Grade 3, ER+/PR+, HER2- Hormonal Therapy 4/1/2015 Femara (letrozole) Targeted Therapy 4/27/2015 Ibrance (palbociclib) Targeted Therapy 10/16/2015 Afinitor (everolimus) Hormonal Therapy 10/26/2015 Aromasin (exemestane) Chemotherapy 12/4/2015 Xeloda (capecitabine) Dx 8/3/2017, IDC, Stage IV, metastasized to bone/liver/lungs Chemotherapy 8/6/2017 Gemzar (gemcitabine), Taxol (paclitaxel) Chemotherapy 11/12/2017 Halaven (eribulin) Dx 11/13/2017, IDC, Stage IV, metastasized to bone/liver/lungs/other, ER+/PR+, HER2-
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Apr 7, 2014 06:11AM Kjones13 wrote:

roses--in the group of 16 families that we attended the retreat with...one woman was in a wheelchair, one man had a cane and had a very difficult time getting around, one man had a "snow cap" (that's what his 4yr old daughter called it) on his head--it looked scarier than it was--it was a clinical trial he was on for brain cancer that sent electric shocks...I don't really know...but all in all, I would say the kids had no clue. They were more concerned with playing with the other kids. I would say a lot of the sick parents were much like us...fighting like heck to stay alive and function as best they can while looking relatively "normal." I did have a talk with my 8 yr old at the time and gave him a heads up that other parents there would be sick an some may be in wheelchairs, etc. also, I asked the organization how the counseling sessions would go because my son knows people can die from cancer but he doesn't know the full extent of my diagnosis. They do not say--you parent has a life-threatening illness how are you coping? They have activities on how to release stress. They have a workbook. It's all about the kids. This info is re: inheritance of hope retreat. 

Little pink houses of hope, I don't know. I do know that they try to take breast cancer patients who are in treatment or very recently done with it. So maybe some bald heads there. But they take any stage of bc. So may have a harder time relating to lower stages?

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 7, 2014 10:54AM Romansma wrote:

Thanks for starting this thread.  Thinking about my kids is the toughest part of accepting my fate.  My youngest just turned 10 this week, he was 6 when I was first diagnosed.  I also have a 17 yr old son, a 22 yr old daughter, a 20 yr old step daughter and a 14 yr old step son.  

I just got back from spring break in Pismo with my youngest and his friends.  We had a great time making memories and I can't wait to do it again!

Hope Dx 10/22/2010, ILC, Right, 6cm+, Stage IIIB, Grade 2, 9/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 11/1/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 4/1/2011 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 6/8/2011 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 11/29/2011 Prophylactic ovary removal Dx 8/2013, ILC, Stage IV, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 9/17/2013 Faslodex (fulvestrant) Targeted Therapy 1/25/2014 Afinitor (everolimus) Radiation Therapy 2/11/2014 External: Bone Chemotherapy 12/6/2014 Xeloda (capecitabine) Hormonal Therapy 2/20/2015 Femara (letrozole) Targeted Therapy 2/20/2015 Ibrance (palbociclib)
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Apr 7, 2014 12:08PM Kjones13 wrote:

I agree that life does go on. I think it's hard to hear that and accept it. I wonder at what age things start to stand still for kids. What I mean is, when someone you love dies, there is a sense of the world going by, other people are moving on with their lives, and you are stuck in your grief. Your world seems to have stopped and it's easy to get stuck there...even for years. I would think death affects older kids more. The younger ones seem more confused by it more than anything. I have talked to two of my friends who lost their mother when they were in 2nd grade and 6th grade. They older one said she remembered her dad and her aunt sitting them down to explain what was happening (at the end). She was glad her mother was at home and she was able to say goodbye. But she said after her mother's death it was all very confusing and her dad was not really the talking type. She also said she wished her mom would have left something for her, like a note.

I was a school counselor at a high school before I went out on disabity. I really should break out my books and re-read a lot of stuff. It seems to hit home now. I also have so much guilt because, unfortunately there were close to 10 kids at the school, maybe more, that I knew lost a parent in the last couple years...and I did nothing. I mean I had one on one sessions if they were referred to me, but I didn't reach out! I could have started a group...why didn't I do more for them?! Like how I would want someone to treat my kids...

I seem to shut down when I get over whelmed. Which makes things worse because then nothing gets done and just puts more stress on me and my dh. I want to be organized. I want things to be a certain way. I have been able to still do a lot with my kids, unless I feel really lousy and then I just try to lie in bed with them and cuddle and talk and hope that is enough.

For the most part, I have been feeling better, physically, since January. I have three vacations set for this year. I hope to do a lot of little vacations too...my dh worries about how much money we are spending and I just tell him it's fine! Just want to cram as much good stuff in while I feel good, no matter the cost!

I am just rambling...really putting off cleaning my room...how old am I?

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 7, 2014 12:14PM brandall wrote:

I hear you on the vacation/money thing.  ALL I want to do is go on vacations and make memories with my children.  Pretty hard to do when you don't have a lot of money to begin with and my husband really can't take a lot of time off of work.  I know I've spent more money this year than I should, but I just keep wanting to do more and more fun stuff with the kids :(

Brandi - Mother of 2 - Daughter age 6, Son age 3; Liver mets Dx 7/24/2012, IDC, Stage IV, Grade 3, 7/17 nodes, mets, ER+/PR-, HER2- Surgery 8/1/2012 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 9/10/2012 AC + T (Taxol) Radiation Therapy 1/20/2013 Breast, Lymph nodes Hormonal Therapy 2/28/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/19/2013 Prophylactic ovary removal Hormonal Therapy 2/20/2014 Femara (letrozole) Hormonal Therapy 5/30/2014 Faslodex (fulvestrant) Targeted Therapy 4/8/2015 Afinitor (everolimus) Hormonal Therapy Aromasin (exemestane)
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Apr 7, 2014 01:42PM in_cognito wrote:

My family attended a Little Pink Houses retreat in 2011 and it's very structured to doing activities and hanging out with other families going through all different stages of breast cancer. There are no formal counseling sessions during the retreat- it's mostly about connecting with other families as much as you want. You can choose to participate in all the activities or just do your own thing in your beach house. It's very low key, and I highly recommend going if you can. 

Dx 4/30/2010, IDC, 1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 7/26/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2010 Surgery 11/19/2010 Mastectomy: Right; Prophylactic mastectomy: Left Dx 2/19/2014, IDC, Stage IV, Grade 1, 0/0 nodes, ER+/PR+, HER2- Chemotherapy 3/7/2014 Xeloda (capecitabine) Chemotherapy 5/15/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/15/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/3/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2014 Herceptin (trastuzumab) Targeted Therapy 9/22/2014 Perjeta (pertuzumab) Chemotherapy 9/23/2014 Taxol (paclitaxel) Chemotherapy 1/12/2015 Gemzar (gemcitabine) Chemotherapy 2/21/2015 Halaven (eribulin)
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Apr 7, 2014 03:02PM Kjones13 wrote:

thanks for the input about Little pink! Glad you and your family had a good time! Where did you go? My dh and I are going on the couples retreat in St. John in may!!! So excited! Oh and I think for little pink, you need to apply ASAP...like January 1st.

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 7, 2014 04:35PM in_cognito wrote:

kjones- we went to Myrtle Beach. It was such a great retreat. You will have a great time in St. John. Prepare to be loved on :) 

Dx 4/30/2010, IDC, 1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 7/26/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2010 Surgery 11/19/2010 Mastectomy: Right; Prophylactic mastectomy: Left Dx 2/19/2014, IDC, Stage IV, Grade 1, 0/0 nodes, ER+/PR+, HER2- Chemotherapy 3/7/2014 Xeloda (capecitabine) Chemotherapy 5/15/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/15/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/3/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2014 Herceptin (trastuzumab) Targeted Therapy 9/22/2014 Perjeta (pertuzumab) Chemotherapy 9/23/2014 Taxol (paclitaxel) Chemotherapy 1/12/2015 Gemzar (gemcitabine) Chemotherapy 2/21/2015 Halaven (eribulin)
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Apr 7, 2014 10:37PM Kjones13 wrote:

so I have a few things from my retreat that I can share if people want...I have a lengthy list of questions if you need some help/direction with what to talk about in a video or what to write in a journal. Also, my son has an activity book that was used during the retreat. There are several activities you could do with your kids to help them express their emotions. Let me know if anyone is interested because it will take me some time to write it all out.

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 7, 2014 11:48PM LittleB wrote:

Hi Kjones, Thanks for starting this thread. I have an 8 yr daughter who is the apple of my eyes. the thought of leaving her without her mother just breaks my heart. I was diagnosed stage IV from the start, that will be two years ago this coming August. Just trying to make loving, meaningful memories and praying to see her graduate high school.

This is my very first post.

B

Mother to an 8 yr daughter. Mets to rt. Iliac, sacrum and liver. Dx 8/13/2012, IDC, Stage IV, Grade 2, 5/6 nodes, mets, ER+/PR+, HER2- Surgery 8/27/2012 Lumpectomy: Right Chemotherapy 10/9/2012 Taxol (paclitaxel) Hormonal Therapy 2/4/2013 Surgery 4/2/2013 Mastectomy: Left, Right Surgery 6/29/2013 Prophylactic ovary removal Hormonal Therapy 9/3/2013 Arimidex (anastrozole) Hormonal Therapy 3/5/2014 Aromasin (exemestane)
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Apr 8, 2014 12:07AM Kjones13 wrote:

hey littleb! My nickname in high school was little bit and people still call me lb. thanks for posting. I will be two years in September. Aren't little girls the best! 

I just had a thought...if you all feel comfortable doing it, I would love to see pics of your babies! Just know how proud we are as mothers...I'll show mine off first.

My son cole is 9 and Cora is 3!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 8, 2014 01:18AM in_cognito wrote:

great idea! hope I posted this right....my littles. 

Dx 4/30/2010, IDC, 1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 7/26/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2010 Surgery 11/19/2010 Mastectomy: Right; Prophylactic mastectomy: Left Dx 2/19/2014, IDC, Stage IV, Grade 1, 0/0 nodes, ER+/PR+, HER2- Chemotherapy 3/7/2014 Xeloda (capecitabine) Chemotherapy 5/15/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/15/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/3/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2014 Herceptin (trastuzumab) Targeted Therapy 9/22/2014 Perjeta (pertuzumab) Chemotherapy 9/23/2014 Taxol (paclitaxel) Chemotherapy 1/12/2015 Gemzar (gemcitabine) Chemotherapy 2/21/2015 Halaven (eribulin)
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Apr 8, 2014 01:21AM in_cognito wrote:

kjones- your kids are gorgeous. I'd love the info you have for journaling....whenever you have time.

Dx 4/30/2010, IDC, 1cm, Stage IB, Grade 2, 0/7 nodes, ER+/PR+, HER2- Chemotherapy 7/26/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2010 Surgery 11/19/2010 Mastectomy: Right; Prophylactic mastectomy: Left Dx 2/19/2014, IDC, Stage IV, Grade 1, 0/0 nodes, ER+/PR+, HER2- Chemotherapy 3/7/2014 Xeloda (capecitabine) Chemotherapy 5/15/2014 Carboplatin (Paraplatin), Gemzar (gemcitabine) Chemotherapy 6/15/2014 Abraxane (albumin-bound or nab-paclitaxel) Dx 9/3/2014, IDC, Stage IV, Grade 2, ER+/PR+, HER2+ Targeted Therapy 9/22/2014 Herceptin (trastuzumab) Targeted Therapy 9/22/2014 Perjeta (pertuzumab) Chemotherapy 9/23/2014 Taxol (paclitaxel) Chemotherapy 1/12/2015 Gemzar (gemcitabine) Chemotherapy 2/21/2015 Halaven (eribulin)
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Apr 8, 2014 04:45AM chris1959 wrote:

oh the picture idea is great I don't have little ones but I have grandkids and a great grand baby

sorry I downloaded the wrong picture

my great grandson        ...your children are darling

Dx 10/2011, 5cm, Stage IV, 23/30 nodes, mets, ER+/PR-, HER2- Surgery 10/27/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 11/5/2011 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 7/19/2013 Bone Chemotherapy 2/10/2014 Xeloda (capecitabine) Surgery 2/19/2014 Prophylactic ovary removal Surgery 3/19/2014 Prophylactic ovary removal Radiation Therapy 6/21/2014 Bone Chemotherapy Taxol (paclitaxel) Chemotherapy Carboplatin (Paraplatin), Gemzar (gemcitabine)
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Apr 8, 2014 06:16AM Fitzy wrote:

Me & my boys on my 56th birthday in November, 9 days before I got dx with liver mets & I was so fit, strong & healthy. My eldest had just graduated from high school & is now at University, the youngest is 14. I have to make it to November 2017, my youngest's 18th, not doing so is my greatest worry. 

Love all the gorgeous children photos, they are precious. Good luck everyone, our babies need us.

Dx 7/30/2004, ILC, 6cm+, Stage IIIA, Grade 2, 5/6 nodes, ER+/PR+, HER2- Chemotherapy 8/5/2004 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/30/2004 Femara (letrozole) Surgery 1/7/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/4/2005 Breast, Lymph nodes Surgery 2/6/2008 Prophylactic mastectomy: Right Dx 11/22/2013, ILC, 3cm, Stage IV, mets, ER+/PR+, HER2- Chemotherapy 11/28/2013 Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy 7/8/2014 Faslodex (fulvestrant)
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Apr 8, 2014 10:46AM Kjones13 wrote:

in cognito--your Elsa and Anna are so stinkin cute! Love their hair!

Chris--superman is adorable!

Fitz--you do look very healthy and fit!! And there is no denying your sons! How handsome! We are all pulling for you to make it beyond 2017!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/8/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/16/2012 Herceptin (trastuzumab) Targeted Therapy 10/16/2012 Perjeta (pertuzumab) Chemotherapy 10/16/2012 Taxol (paclitaxel) Hormonal Therapy 2/28/2013 Surgery 10/23/2013 Mastectomy: Right
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Apr 8, 2014 02:10PM Romansma wrote:

I love seeing all the kiddos!

This was taken in December at our Vow renewal.  We wanted to have a ceremony that included all of our kids.  It was incredible.  My youngest, at 9 yrs old, took his best man duties very seriously and all on his own, got the microphone and made a wonderful toast.....all of his older brothers and sisters followed his lead.  It was a day we will all remember always!

Hope Dx 10/22/2010, ILC, Right, 6cm+, Stage IIIB, Grade 2, 9/10 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 11/1/2010 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 4/1/2011 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Radiation Therapy 6/8/2011 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 11/29/2011 Prophylactic ovary removal Dx 8/2013, ILC, Stage IV, mets, ER+/PR-, HER2- (FISH) Hormonal Therapy 9/17/2013 Faslodex (fulvestrant) Targeted Therapy 1/25/2014 Afinitor (everolimus) Radiation Therapy 2/11/2014 External: Bone Chemotherapy 12/6/2014 Xeloda (capecitabine) Hormonal Therapy 2/20/2015 Femara (letrozole) Targeted Therapy 2/20/2015 Ibrance (palbociclib)
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Apr 8, 2014 02:15PM starbrightlyshines wrote:

Thank you Kjones for starting this thread, it has beeen something I had been thinking about doing for months. I am good at procrastination :)

Itis spring break week here so I am busy trying to entertain my 6, 11, and 14 yo. My 17 yo is off with her friend's family on a sunny vacation trip. I have to confess it seems like so many people are on vacation trips I am feeling kind of depressed. I am dealing with fatigue and foggy thinking so it is hard to be the mom I want to be. I am trying to figure out which med is making me feel so crappy. I am hoping it is a med and not a new sign of cancer spreading somewhere. Will we ever get to a point where that's not constantly on our minds? 

So a big hello to everyone here. I haven't read all your posts, it is noon and I am still in my pj's so I need to get up and get the day started,  Lol! 

Dx 10/2012, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 10/1/2012 Hormonal Therapy 6/4/2013 Femara (letrozole) Chemotherapy Gemzar (gemcitabine)
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Apr 8, 2014 05:59PM Fitztwins wrote:

My boys,the picture was  taken last summer on the shores of beautiful Lake Michigan at sun Down..

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)

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