Mothers with school aged children
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that's amazing. So glad you will have a great time with your son. Enjoy the time togethe
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that is awesome tarheel! Happy dance for sure!!! Great picture of the three of you! I didn't realize you were doing a clinical trial. How do you like Sloan-Kettering? What a great thing--the dream team! You will have such a great time together!!! How fun! Take pictures!!!
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Thanks everybody. :-D
Kjones, I couldn't figure out how to put the clinical trial information in my treatment. The menu choices wouldn't let me fill in any info. Does anyone know? I guess I can put it in my signature.
I couldn't find ANYONE on the boards to talk to about the drug trial. It's called DGC-0032 and I was taking it with Femara. I say "was" because I'm taking a 2-week break. I'm having similar side effects that I had with Afinitor. The doctor may put me back on, at a lower dose, we will see what scans say next week. I had great response after 4 weeks, one tumor in my clavicle area disappeared! However, it could be the Femara that's helping and not the DGC-0032. I'm happy for slowing down progression but kind of disappointed that my body reacts so much to treatment. I'm hoping to harness that sensitivity to my advantage, been thinking about how I can turn that sensitivity into an asset.
I know it's summer and most of us are lurking, but Moms, come on, share your summer photos, please. I love to see you and your kids, your pets, your vacations. I'm convinced there is something healing about that mother-child love, so share some of that medicine.
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We are enjoying summer for sure. Here we are in Chincoteague, VA. We will be in Cape May, Cape Cod, New Hampshire, and Maine before Summer's end.
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just got back from 3 week trip to Ireland.
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awesomeness! We recently moved, went to the beach for vacay, had all-stars baseball, a baby shower for my sister-in-law, and extensive treatment on my horses hooves. Busy!!
Love the pictures you guy's!
I am having a difficult time with something...this past September a little girl was dx with burkitts lymphoma. She passed away Thursday. 7 yrs old. I just can't even wrap my head around that!!! Why? I love God, but this is really testing my faith. Defiantly makes me shut up about my problems. This poor family. I can't really even form words to describe.
Breathe in, breathe out. Sorry just had to say it somewhere
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kjones. Breathe in breathe out is sometimes all we can do in the moment. I can't even begin to imagine the hurt her family has and will go thru. My dh and I always say about me having cancer : at least it's not one of our kids. I have no great words of wisdom just letting you know Iam standing beside you quietly feeling your pain as you have done for me so very many times. Rant in. Sometimes that helps. Big hug
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Kjones- My good friends lost their son to neuroblastoma almost 8 years ago. He was 6. I don't understand when things like that happen to kids or their families. I am with Patti- I hate having stage 4 cancer, but am always so grateful it is me and not my children.
Hugs to you and your friends.
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My daughter (middle) with good friends in Ocean City, NJ. That was a big night for me. We spent all day on the beach and I was tired and in a lot of pain. I was pretty sure I was going to miss the Boardwalk due to how I was feeling. At the very last minute I put on my comfy shoes and decided to go.
I rode one ride and almost immediately threw up. But I managed to keep up with everyone and got to see my girl laugh and smile all night. Priceless.
We've made several beach trips this summer, a weekend in DC, Kentucky, and the Midwest to see family. There are a couple more planned. I'll be tired but I'll be there.
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so this happened yesterday!!!
She LOVED it! Yippee!!
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So fun to see you ladies enjoying life with family. Great pictures!
KSkier, I am catching that you have almost 8 years under your belt with TN mets. Oh, my golly! I cannot tell you how hopeful that makes me.
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Kjones13: They are just mini-mes, aren't they? I love this age, and I love being able to share our passions with them
. And yes, Kaayborg: these are pictures of my baby, the one who I tried so hard to breastfeed through what the doctors were just calling an infection.
This is one of my favorite photos of me and my mini:
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Moms, thank you for sharing your photos and stories. I see courage and joy and affection. And smiles. You and your kids are beautiful. You help me be braver.
In this imperfect world, we all must die. We don't get to choose when. This is tragic to me, and the impact of a child's death on a family is unimaginable. I think of a hundred or so years ago, when newborn/childhood deaths were much more common. How did our ancestors cope with the grief of losing baby after baby? I don't understand why I'm alive when precious children aren't. I'm mystified. But I never doubt God's wisdom or love. I have crazy miracles in my daily life that strengthen my faith each day.
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My youngest graduated from high school so I will be graduating from this board. He will be joining the Fine Arts program at UCLA in September. Love to all of you Moms!
This picture is a picture from our trip to Tokyo a couple of weeks ago. Got to be with my son for two weeks! Had a great time!
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Love all the pictures!
Congrats on the double graduation, Susan! You look like siblings! DD is also doing Fine Arts, which in our system you choose in high school and includes music.
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Hello ladies, not wanting to repeat stuff probably discussed already in the thread but I'm looking for advice. I have a 5 year son. I was originally diagnosed when he was just over a year old. He has no memory of my first treatment. I was diagnosed with bone mets there in April. Was on arimidex and had progression in first couple of months. Was hoping I could just take hormone tablets and go along as normal without saying anything. Unfortunately ive had to start Abraxane chemo. Will lose my hair next week. We are just wondering how to tell our son about my treatment with frightening him. We were thinking that we were going to say I have a disease in my bones and the doctors are giving me very strong medicine to help me and they are doing their very best. He will ask if I'm going to die but obviously I don't want to get into all that yet. I can just see him being so anxious and it breaks my heart that his childhood will be marred by my cancer. I have an incredibly supportive husband and we are a tight unit of 3. Just wondering how you guys have spoken to your children about cancer. Anything that has helped them deal with this.
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Lilly, this issue plagues me more than any other. My youngest was 6 when my cancer "returned" 7 mos. after ending treatment for my initial dx. My children seemed relatively unphased my my having cancer again, like I'd gotten the flu again or something. But a few months later, my youngest asked if my cancer was gone yet. Long story short, I basically told her that my cancer will not ever go away. She immediately shouted that she knew it, she knew I was going to die. I ended up telling her that the medicine I get keeps the cancer from growing so I don't die. She was then relieved and concluded that I wouldn't die until she was all grown up. I said, "I certainly hope so" which she took as a conclusive "yes." After I told her this I updated my older girls with the same info minus the "not dying til they're grown part". A year later, they seem to still be good with this amount of info. The youngest most recently in a discussion about sunscreen and why we must wear it even if we don't care it we get burned said, "Oh, what is the big deal about cancer anyway!" So I guess she's not worried about much. Right now I'm most unsure about my oldest who's soon to be 13.
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Getting ready to go out on our boat
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Lilly, very tough question. I don't have the answers but am interested to hear from others on this.
Kaayborg, your youngest sounds like a wise one!
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lillymillie, have you investigated coldcaps? There is no reason that you have to lose your hair. Coldcaps are FDA approved and there's plenty of info here on the discussion boards. I get upset when I hear about people so anxious about losing their hair during chemo, and there's a new treatment that women don't seem to know about. Why aren't doctors sharing this info?
Children around the age of 5 on up are tuned in to our anxiety much more than our physical appearance or what we tell them. We can't reassure our children that we aren't going to die when that fear is weighing deeply in our own minds. We can't tell them we have a small issue with our bones when we suddenly become bald, pale and frail. That's scary.
For me, I find the positives and the truths and focus on those when I talk to my son, who was 10 when I was diagnosed. Call it cancer. That's what it is. You won't die from cancer in your bones. The cancer came back but that happens. I explained to my son that the reason everybody seems sad is not because I am dying soon, but because other people have died. It's a hard concept for a child to grasp that Mommy has something that other people die from but Mommy isn't dying right now. The most reassuring thing for my son was to know that I wasn't going to die RIGHT NOW, and he didn't understand that until I told him. He truly thought he might wake up and find me dead. (I'm glad he told me. I had no idea he was scared that I might die suddenly.) This fear is totally understandable when you think about the numerous hospital and doctor visits. I told my son, "I can't promise you I won't die. Everyone dies eventually. But I CAN promise you that I'm OK today, and the doctors are working to keep me healthy. And I promise to let you know if my condition gets worse."
Cancer can disrupt the family routines that comfort little ones. The routines my son enjoyed -- family mealtimes, watching movies and bedtime stories/cuddling --were all routines that required little energy from me. Whatever you can do to maintain those routines will probably mean more than what you say.
I'm curious why your medical team hasn't tried something besides chemo, when you don't have any cancer in your organs and you only failed one anti-hormonal. Have you had your tumors genetically profiled? I'm sure I'm not using the exact scientific words. My cancer responds to Afinitor -- my doctors knew this before I ever took one pill because they had studied my cancer's genes. I have had Stage IV for almost 5 years and have never needed chemo. I always urge women to seek out non-chemo treatments especially when so many are available.
Wishing you strength and peace.
To everybody: I'm loving all the photos. The smiles and the family resemblances. You make my day!
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Tarheel, your approach with your son sounds good. Balancing being positive, honest and realistic.
I looked into cold caps but it sounds like it might not be suited for mets, where chemo is ongoing and more than just an 8-cycle course. For some reason, it is really expensive (not sure if it is a true cost thing or opportunistically priced because people want so much to not loose their hair), high maintenance, extremely painful and time consuming (adds hours onto already long chemo treatments). You have to be there early to start the cold caps and have to stay hours after chemo for cold cap treatment. I asked the head chemo nurse at one of my treatments about cold caps and was told all this. There was a special freezer in my treatment room and I asked what it is for. It was for cold caps. However, I would be curious to hear from someone who has tried it. It would be SO nice not to worry about hair loss again!
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I looked into cold caps too and concluded the same. Too much hassle, time and effort during infusions and even in between. It seems you must really baby your hair (not brushing or washing too often, silk pillow cases, no hair accessories, etc.) and even then, it's not always so effective. Couldn't imagine doing all that long term. I don't want to lose my hair again but I'm planning to embrace it full on this time, not even wanting the hassle of scarves and hats and wigs, especially in summer. We'll see. Now living and enjoying life takes utmost priority. An immunotherapy with abraxane is next on my list, but hopefully not for a long time.
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Here are my kids being sillies. I now have extensive liver and lung mets and I'm on Gemzar and Carboplatin. I started last week. I have a second opinion appointment tomorrow and I'm also going to Memorial Sloan Kettering on Sept 1st for an appointment to see about clinical trials. I've been struggling w pain and nausea a lot. You ladies really know how to live, even w metastatic cancer. I did go to the beach last weekend and we are going to North Carolina for a week in August.
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Cristina, your kids are adorable. I'll bet their giggle are contagious. I hope you have a wonderful beach trip and I hope your Sloan-Kettering visit goes well. It doesn't look like you've done Afinitor/Aromasin, and it's been a couple of years since Tamoxifen. Some women are having success cycling back through former treatments. I did a Tamoxifen/Afinitor combo recently. MSKCC has tested my tumor for genetic mutations so they knew I would respond to Afinitor. I can't say enough about Sloan. Good luck.
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Cjanet, love the pic!
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OK Ladies, I just spent parts of the past 3 days reading all 22 pages of this thread. I must say that you Mama's are AMAZING!!
I am truly inspired by all that you have shared over the past couple of years.
My wife, KD, was DX Stage 4 de novo in February of this year. After 6 months, we are just getting our bearings, and we have been on quite a roller coaster thus far. But that story is for the other threads.
I have encouraged KD to join BCO, but she is still hesitant. She is convinced that she will only read about "the bad stuff". I try to let her know how inspirational y'all are, but I am sure that all of you understand how fine the line is between being "encouraging" and being "pushy". :-)
I do want to say that i have noticed that a common topic discussed here is whether or not to write letters / diaries / journals for your children to read after you are gone. May I suggest that at some point you share your login and password with a close friend / relative so that your children can one day read all of your posts here and truly understand the depth of your love for them? I have seen it page after page. What a wonderful testimony it has been of your love for your children (and some of your dh's). I have been brought to tears a couple of times.
I am not here to ask your advice, I am just here to say, "Well Done". You have taught me more than you can ever imagine about how to really LOVE my boys like a Mom does.
Carpe Diem,
KDs-Husband
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thank you KDs husband.
She is very lucky to have you to support her.
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Thank you, KDs-husband! cjanet, super cute kids and photo!
Now I have to rush to bring my daughter her violin in school, as she forgot it this morning.
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KD's husband, that was so kind. Thanks for taking time to say it. We're here for you and your wife anytime.
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