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Old 10-23-2008, 04:38 PM   #1
freyja
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BC moms stories

I'd like to start a thread for moms like me to share stories and advice about talking to your kids about your cancer. I think many moms aren't sure how to explain it to their kids, and some don't even tell them. Here is my experience, and so far it's worked out very well.

My son is five years old. The day my doctor told me my diagnosis I was at work. I left early and called my husband and picked him up. We went to my mother in law's where my son was spending the day. We sat on the back porch and with my son in my lap, I told him that the doctor took a piece of the bump in my chest and looked at it in a microscope. He found out that the bump is making me sick.
My son said, "oh." in a sad voice.
I told him the doctor is going to give me some really strong medicine and take the bump out and I will get better.
He said, "oh!" in a happier voice. Then I said,
"You know how sometimes when you're sick you have to take some medicine and it doesn't taste good and you don't like it, but then you get better?"
"Yeah." he said.
I told him the medicine is going to make me feel kinda yucky for a while, but it's going to make me better, so it'll be o.k.

That seemed to be enough for that day. I explained a little more to his grandma, and went home to make some more phone calls.

Since then, he's gradually come to understand more and more about it. He hears me talking to other people about it, and sometimes gets worried and asks me things like, "are you gonna be o.k. Mom?" I tell him yes and that I'm getting better, it just takes a long time, and I'll always be his mom and love him and I'll always be with him in his heart. It's hard for someone his age to understand the length of time that I have to take this medicine before it's finally over.

When it was time to shave my head, I let him give me a haircut first...with rules made that he should not cut his hair or anyone else's, of course. It made it fun for him and got to be part of the process, so it wasn't so shocking for him. He calls me "blank haired" and likes it better when I don't wear my wig.

He watched part of the "Living Proof" movie with me and that helped him understand even more. When one of the characters was celebrating that her lump was gone, my son said, "I heard you say that your lump got smaller." He related me with that character on the movie and I think that was good.

It continues to be a very sensitive subject, especially if I'm feeling sick after chemo, and he wants to make sure it's only temporary. If anyone else wants to share their experience in this matter I'd like to hear it.
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"Dancers Against Cancer" in the Eugene, OR Komen Race for the Cure 2010
Diagnosed 8/7/08 with stage 3 invasive ductal carcinoma, micropapillary pattern, Her2 3+, ER+,PR-, grade II, positive lymph nodes.
Received 6doses of Taxotere, Carboplatin with Herceptin continuing for a year...DONE.
1/28/09 Left Modified Radical Mastectomy, Right Simple Mastectomy.
Surgery pathology: No invasive carcinoma present and 17 lymph nodes removed all negative! Only small amount of carcinoma in situ in left breast.
March/April '09, Radiation to left chest wall.
Currently involved in Neratinib clinical trial.

"Well being I won
and wisdom too,
I grew and joyed in my growth;
from a word to a word
I was led to a word
from a deed to another deed." (Odin)

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Old 10-23-2008, 06:20 PM   #2
juanita
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my older son was in his freshman year of college when i was diagnosed with this dreaded disease. he was away at school and couldn't fo anything here, so i made the decision to not tell him anything till we knew for sure what was going to happen and when he was home on break. wrong decision. though he's jnot really mad at me still, he does still have feelings about it and they aren't good ones.
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Old 10-23-2008, 07:53 PM   #3
Margerie
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My kids were 2, 4 and 6 when I was diagnosed. We told them they found "bad cells" in my breast and the doctors were going to get rid of them with medicine and surgery. I was so worried about how the news and the treatment would effect them, but they were troopers. I think they pick up on fear and uncertainty and my dear hubby and I sure could put on an act for them. We also tried to keep routines as normal as possible for them.

We did not use the term "cancer" for a long time. Three years later, they all know I had and beat breast cancer.
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Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
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Old 10-24-2008, 06:39 AM   #4
WomanofSteel
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My daughter was 12 the first time I was diagnosed and 15 when I had my reoccurence. Each time I tried to be honest with her and tell her exactly what was happening while reassuring her that I was doing all the doctors told me to do and would be ok. This time I let her buzz my hair down when I started to lose it and we too had a mother daughter moment. I try to stay as positive as possible for her. I think it is better to be honest.
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dx aug 03
invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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Old 10-24-2008, 07:23 AM   #5
dchips1
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My son was also 5 and my others were teens

A few resources that I found helpful
http://www.kidscope.org/ they have a PDF booklet called Kemo shark, I printed it in black and white and then he colored it to match the web picture. I still get herceptin through my "Porch" by chemo shark. Dustin is now 8. hurricane voices has a list of good childrens books, amazon, of half price books usually has them. the national cancer institute has a teen guide "when your parent has cancer" that you can add your specific info to.
We told the kids and the teens reactions varied and the five year old says you need everyone to bring you gatorade. When asked why he didn't talk to his kindergarten teacher he calming stated "Well you could die, I don't want to scare her!" We were in the store and I just picked him up and held him and cried. None of the teenagers were ready to go into it deep yet, their reactions were more of how does this affect me? Over the years Dustin now 8 still asks about chemo shark and I tell him I get chemoshark weekly named herceptin. The older kids will go and occasionally ask how things are going but even then It is usually was aren't you wearing your hat when I was bald for the second time, or why can't you take me somewhere, because I was tired. My daughter who just left for college when she gets home she is more clingy both from being gone and worrying about me. The other 2 17 year old kids well what's for dinner and I need money. Occasionally one will ask are you going to die? The answer I give is not today. Unless I get taken out by teen drivers like you, or get hit by the bus..!!!!!!

Take care, kiss your kids every night, touch them , love them, tell them the things you want them to always remember , I love yous , love God, be a good parent, because you'll sleep better knowing that if the next scan or test is bad : you have cherished your kids and spouse, and if the bus comes they will know that you LOVE THEM
Sorry if this is all over but this is how I live with stage 4 lots of love and humour.

I pray for you and your journey with your young child.

Darita Pfeister
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dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain

1/29/14 HIHO HIHO its off to Neuro surgery I go





Life is Good when you wake up in the morning and take a breath and know that God has given me another day.


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Old 10-24-2008, 08:31 AM   #6
mimiflower07
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this is a great but very difficult topic. Children are so different. My son was nine yrs old when i was diagnosis.
His personnality is such that he has always been interested in learning about viruses and illness(partly due to the school exposing them to many issues) He would often come home fr school wanting to share what they learn't. At times I felt he was aborbing info with an underlined fear(they know to much). So when i recieved my diagnosis we knew we would have to pick our words carefully. My daughter was five(a young five).
When we told them we shared that mommy had been to the Dr. The Dr told us that i might need to have a piece of my breast....before i was finished talking. Josh looked straight at me and ask "Do you have breast cancer are you going to die like Terry Fox" . We continued to talk but we only shared what we felt they needed to know or what we thought they could handle. There have been many tears for Josh because, he gets it. Mimosa just thinks i was sick and now better. Josh developed mild anxiety during the yr of treatment, loss of hair.
He tried very hard to be brave but he was a normal boy who was scared. Today he is a yr older as well a yr wiser. Breast Cancer month has come. He talks openly about wanting to find a cure. He is changed. One night sitting on the sofa together he looked at me " mom i think i would like to get a tatoo..i saw a beautiful angel
and it was dedicated to the memory of some one you love" I cry now when i remember this conversation.
I just looked at him in tears, well Josh i'm not planning on going any time soon. He laughed then said but i think it would be so nice for kids who's mom's got cancer.

There have been many more incredible moment. Like the time he came home from school wanting to buy a whole bunch of lotto tickets, so if he won he would give it all to finding a cure.
All children are different but this whole sh...disease has still allowed me so many teachable moments with my children. About compassion for other, never judge unless you've walked a mile in another childs shoes.
You never know what other children are dealing with at school so be sensitve and forgiving....it has been a journey!!
thanks for starting this dicussion.(maybe i wont need therapy after all...lol)
Suzanne
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dx aug10/07
3 pos high, grade 3
tumor 2.5cm multifoc
bil mast recon sept 24/07
neg snb/neg lymph vascular
clear marg
chemo a/cx 4 rds
tomoxifan started feb11/08
herceptin to begin soon
herceptin completed feb/09
aromacin(A.I)for as long as i can
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Old 11-02-2008, 10:27 AM   #7
freyja
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Thumbs up Thank you

Thank you all for your meaningful and helpful and powerful contributions to this post. Nobody wants to have to introduce any child to the reality of Cancer. It's not fair that we have had to do it, but I think many of us will agree that the wisdom and courage of our kids is amazing and actually gets us through a lot.
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