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Any mom's of TNBC daughters?

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thepeddlerswife View Drop Down
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    Posted: Oct 06 2011 at 12:08am
Wondering if there are any moms of young daughters that have been diagnosed with TNBC? Haven't found any forums that support moms. I am a caregiver but I AM A MOM! It broke my heart when she sent me a picture of her hair falling out today. I have been there for her testing and her first chemo. I am going to miss her second chemo this Friday but will be there in 5 days. I feel guilty. Overwhelming guilt.
She assures me she will be fine and in reality is being stronger that I am. She has her kids, 8 and 6, to keep her grounded and a very supportive BF who understands because he lost his mother to Leukemia 5 years ago.

So, any mom's out there? I would love to start a support group online for moms!

Kim
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kirby View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 12:33am
I don't remember any mom's recently but we have had some mom's in the past. Do feel welcome to come on anytime. There are several caregivers or support people that post.
 
So sorry your daughter was dx.
 
I was a single parent when I was dx 11 years ago. My daughters were 9 & 13. I tried to keep everything normal for them. I guess I was successful because I sometimes feel they weren't affected at all.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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thepeddlerswife View Drop Down
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Kirby, thank you for responding. How did you handle it as a single mom? Did you have help every day? I feel like I should be there every day and I can't. It's the worst feeling in the world. You are supposed to be there for you children and what is going on in my life is interfering with that. I will be there as much as possible but I feel so guilty not being there every day.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 1:29am
I am never sure how to say this other than put it out there. I hesitate because it always sounds so shocking, even to my ears but I tend to live in denial and move forward. My mother had just passed away between the time I found my lump and had the excisional biopsy. She had struggled with ovarian cancer for 3 1/2 years. On the one hand I was somewhat cancer familiar and my daughters were used to seeing a bald head. On the other it was OMG cancer.Telling the kids was the hardest because i didn't know how they would react, especially with their grandmother just passing. My oldest had written a report for school on cancer so her reaction was positive. that at least breast cancer was better than ovarian. I seized on that. My aunt came and took care of my kids while I had surgery and stayed for a week. I felt that was enough. I am fortunate to have great friends who were willing to step in. Being a single parent I was used to taking care of things myself. One of my friends insisted on taking me to every chemo appt. I had chemo on Monday morning and went to work on Wed. The last chemo [ I only had 4] I didn't go to work until Thurs. I had a housecleaner that came every other week. Someone usually made dinner for us the chemo week. At my kids ages they were more self sufficient. There was only one time I had to pick my oldest up from a function after work and I was fading really fast. I had barely energy to talk. I told her she had to get in the car fast because I had to get home now. She was sweet. At 13 she offered to drive ! I usually would come home and lay on my bed. A darkened room with total quiet was great. I never fell asleep, I just needed time to regroup. The chemo wasn't too bad. I did accupuncture directly after every treatment to maintain my energy level. I didn't hesitate to call friends when I really needed something. Most people were really great. The time passed quickly. Haha. easier to say now.
 
It sounds like your daughter feels confident she has things under control. Interestingly, the person with cancer usually feels they need to comfort those around them that are freaked by their diagnosis. I am sure your daughter knows you are doing what you are able.
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads
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chloey View Drop Down
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Kim, My daughter was diagnosed with TNBC in November of 2010. As most here know that year was a whirlwind of emotions. My daughter was stage 3 with 4 positive nodes. She has finished her treatment of 8 rounds of chemo (4 AC and 4 dose dense Taxol), a double mastectomy, and 30 rounds of radiation. She has yet to do the reconstruction. She will eventually have a hyst. in order to lesson her chances of recurrence elsewhere.
I say all of that to say this - You will ALWAYS be a "Mommy" - no matter the age of your child. You do the very best that you can do and she will know that! Be there when you can - but realize there are times that she will need you to watch the children or just go with her to purchase mastectomy products (if needed).
Losing her hair was rough on my daughter (not because she is vain) but because her 5 year old told her that she couldn't be a princess with no hair. So we took the little one and got my hair cut in a neck-line and told her that mine would grow back just like Mommy's would. :-)
Believe me, her Dad and I shed lots of tears - but we tried to do it in private. She has a wonderful husband and a lot of support as it sounds like your daughter has as well.
One thing that my daughter said was that sometimes she just didn't want to think or talk about cancer! She needed to have a conversation that did not include cancer. She also wanted her girls (4 of them) to be able to go on with their activities as much as possible. Of course, this meant that Mom, Dad, sister, best friend, etc took up the slack when she or their Dad couldn't be there. We were blessed with so much support of our own!    
There will be times she may just want to be alone - don't be hurt if that is the case.
I would have given anything (as I am sure you would) if I could have just taken the cancer from her but we all know that's not possible! Do NOT feel guilty when you are doing the best that you can do!
I hope I have helped some ... excuse me for writing a book.
Mom of one amazing woman!!!
Chloey
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thepeddlerswife View Drop Down
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Thank you for the amazing response. I am at a total low at this time. Not sure how to deal with this. Your response gives me hope.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 12:46pm
Please try not to feel guilty.  There are enough bad feelings associated with bc that it would be better for her, and you, if you skipped this one.  Depending on your relationship, she might actually prefer some privacy at times and might like to go to chemo with her husband or friends.  During serious illness, the community shares the burden of caring for those in need.  It doesn't all have to come from you, and is actually better for her if loving care comes from many sources.   When I was going through treatment, I really appreciated the times my mother visited, but those weren't that many and I was completely fine with that.  I still felt very cared for by her, and actually preferred to go to chemo with my husband as a weird sort of 'date'.  Sometimes it is easier for the person in treatment if those around her don't have so many big feelings about what is happening.  Does that make sense?  My mom tends toward grief and guilt, and while I love her dearly, it was easier for me to spend time with people with less overwhelming feelings.  Then again, my relationship with my mother has been complicated for a long time.  I of course have no idea what it is like between you and your daughter.

Anyways, just some thoughts on this.  It would be great if you could let go of your guilt and just enjoy and support your daughter in the way that works for both of you.  It may not look like Tarzan swinging in to the rescue, but that's ok.  Probably better for everyone, you know?

Good luck with this, and I'm really sorry you are being faced with this.  In some ways it is probably harder for the mothers than the daughters, as the last thing we want in life is to see our children suffer.

love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Grateful for today View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Grateful for today Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 12:57pm
Hi Kim,

First, tons of caring and positive thoughts to you and your daughter.
Your daughter is fortunate to have you for her mom.

I do not have a daughter with TNBC.
Do know of a group that you may decide to call. The group is for mothers who have daughters
with all breast cancers and not just TNBC.

The group is for mothers with daughters with breast cancer.
They offer individual support from volunteer mothers.
They have 2 free booklets.....one for mothers....one for daughters. (Have not seen these booklets).
Does not appear that they have an online forum.
The group: MSDBC. Mothers supporting daughters with breast cancer.
Phone: 410-778-1982.
website: http://mothersdaughters.org
Lillie Shockeny RN who is well known from the Cancer Center at John Hopkins started this group
with her mother.
(I called the phone number to be sure this group was appropriate to suggest. The person said
that recently she had received calls from 2 mothers whose daughters were diagnosed with
TNBC.   Again, group is for all breast cancer types)

With caring and positive thoughts,

Grateful for today...............Judy

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thepeddlerswife View Drop Down
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Judy, thank you so much! I appreciate your help.

Kim
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Post Options Post Options   Thanks (0) Thanks(0)   Quote linjin Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 3:41pm

Hi Kim,

My 25 year old daughter was just diagnosed in July.  She first noticed a very small lump in her right breast in June of this year.  She was told it was a cyst, I had even taken her to my Dr. who tried to extract fluid from the mass.  Which she didn't.  She sent us home telling us to come back in a month and not to worry.  It was just a cyst and the mass should start shrinking.  I took her to another Doctor 2 weeks later and the mass had grown to 7x5cm.  By the time we got biopsies back and saw an oncologist it had grown to 9cm.  Incredible fast growing tumor.  Her diagnosis - Triple Negative Stage III of III.  She has finished her first round of Chemo with AC and will start next week with Taxol.
I have only found one site for moms and daughters.  Its called MSDBC - Mothers supporting Daughters with Breast Cancer.  They are wonderful.  I emailed them and Charmayne got right back to me and sent me some wonderful literature.  Their website is www.mothersdaughters.org
This cancer is very confusing - I read and search for any information I can find.  Sifting through what applies and what doesnt. 
As you say your daughter seems to be dealing with this better then you - is the same as myself.   I'm proud of my daughter and the strengths I see in her.  I can't imagine what its like going through this at their age.
I can't say its good to see another mom on her because I wish no mom or daughter would have to go through this.Heart
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2011 at 9:34pm
Dear Kim/thepeddler's wife,

I don't have a daughter with breast cancer, but I do have daughters and I do have a wonderful mother, so I think that I can understand some of what you are going through. One thing that I am thankful about is that it IS ME with the cancer and not my mother or sister, and that neither of my young daughters has a life-threatening illness.  So I KNOW that you would take this illness for your daughter if you could, but you simply cannot.  And I doubt that anyone thinks that you should have cancer instead of her, and you certainly didn't cause her cancer, so please just try to let go of the guilt!  It's not a productive emotion - it doesn't help your daughter and it doesn't help you.   When you feel the guilt, try to refocus instead on your love and empathy for your daughter and her children.  These are useful emotions!  

Focus on thinking about ways that you can help her and don't waste time or energy on guilt!  Even when you are not with her, you can send encouraging cards to her, or funny books for her to read or movies to watch when she is resting.  Or line up and pay for someone to clean her house, or ask if there are any projects that you could pay someone to do for her (paint a room, hang new curtains, rake the leaves).  Or pay someone to come to her house and give her a gentle aromatherapy massage (my mother-in-law did that for me, and it was heavenly!).

And now for a little tough love.  YOu must find a way to deal with your sadness and refocus on being as cheerful and positive and hopeful for your daughter as you can, because this is how you can help her.  THis is what she needs from you.  It is very hard for us daughters to see that we are making our mothers suffer.  It just makes it worse for us!  You will need to have your moments of sadness, but don't dwell there too long.  Focus on enjoying life with your daughter and her children and the rest of your family because that is what she wants for you.  

Much love,
Beth
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 07 2011 at 4:50pm
Hi Kim,
I'm the one who had breast cancer and I have a daughter. I can tell you that with either scenario (guilt) is not the answer.

I needed all the encouragement, reinforcement, helpful friends and family, but I didn't need guilt. My daughter lives 300 miles away from me and was only able to come when I had my initial surgery. She called almost every day and we shared our lives via phone. NO GUILT... Concern, but NO GUILT.
You have received some great advise from several people already. I am sorry you are having to go through this and I'm sorry about your daughter also. Praying for both of you and all your families and better days ahead.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 11 2011 at 7:16pm
Hi Kim and welcome.  I'm so very sorry to see your family is having to deal with this and hope you will find the support that you need. 
I was dx at the age of 56, went thru treatments in 2003 then it came back on the other side in 2007.
My daughter was dx with multi-focal tumors, one tnbc and one er+ in January of 2007.  I fell to the floor in sobs when I learned she was going to deal with this monster and wished and prayed that it would have come back to me instead.  Well it did one month later so we ended up going thru treatments at the same time.
 
At that dx I learned I was brca 1 positive.  We have a heavy family history.  My daughter also tested positive as did my youngest daughter.  I was devastated.  I had seen cancer take most of my family and it was continuing to rear it's ugly head.  I feel guilt because I have passed this nasty gene on to my children but I can't change it so we have to do what is best to stay on top of things.  I lost my mother to Ovarian ca when she was 46, I am sure this gene came from her and I certainly am not angry with her, it's no one's fault but we mom's naturally don't want these things happening to our children.
 
 
Has your daughter considered seeing a genetic counselor and possibly being tested for a brca 1/2 mutation?  You might check out the website http://www.facingourrisk.org where you will learn alot about these mutations, that is their main focus and they have a great forum for asking questions.
 
You've been given some good advice.  It is crushing to see one of your children have to deal with this but with my daughter and many other young people I have noticed so many of them do quite well.  We as mother's feel or I did that I should be there for her, we live in different States, so that would have been difficult and then I started treatments so out of the question.  I did visit her when she had one of her early surgeries before she began treatment and we kept in touch with phone calls and email.
 
Personalities are so varied, I had become very interested in researching tnbc, busy on this board but my daughter handled her situation differently.  She had 2 young boys, a job, good hubby, friends for support, she really did quite well. I gave her books and magazines, would email her links or tell her of websites but she wasn't really interested, gave the books back to me unread.   She is continuing to do well.
 
Getting a dx of cancer is rough emotionally and physically for the patient.  We all handle it in our own way.  Some are more independent or busy but just knowing a loved one is there if they need them can mean alot.  Sometimes you have to sort of let the one with the cancer guide you in their own way as to what they need and possibly give them space too.  Everyone in the family sort of has to find their footing and it's handled in different ways.  It takes some time.
 
All my best to you both, it will work out.  So many times we worry about things ahead of us, I know I do and so I work on trying to focus on right now, one day at a time, one hour at a time, whatever it takes.


Edited by trip2 - Oct 11 2011 at 7:19pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kelly1843 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2011 at 4:36pm
I'm 43 and a tough old bird, my mom on the other hand is so worried about me (sound familiar?)  If this is you feel free to email her, haphehen@yahoo.com, her first name is Helen, I know she'd ABSOLUTELY LOVE to have contact with others who are dealing with the same emotions as she has been...she's an awesome MAMMA BIRD, taking care of her baby (ME), but I think it frustrates her that I have the attitude that I can deal with this like it's just a pimple or something....please email her...I think it'll help you both deal with the current issues!
Diagnosed July 2011. Stage 1 tumor, lymph nodes clean. Lumpectomy, followed by four bi-weekly AC followed by 12 weekly Taxol, followed by 34 daily radiations.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mom&grandma Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2011 at 10:27pm
Hi Peddler's Wife,
 
My daughter was diagnosed 8/2009 and we went through (and I mean we) chemo for 4 months and then she had a mastectomy.  My daughter has two children, a 11-year old boy named Ty and a three year old daughter named Bella.  They lived with us while she was undergoing treatment and I was her main caregiver so I know just about every minute of her fight.  It was difficult emotionally for me, but not impossible.  Try not to worry about the worse that can happen because more than likely she will have good results.  I think watching her lose her hair was the most difficult.  She was such a trooper through chemo, but when she lost her hair, she just sobbed.  In fact, the tears are rolling down my cheeks as I think about that night.
 
The women on this site are so supportive.  I would not have been able to guide her through the treatment if I did not have them for support and advice.  I was also lucky that there were a couple of young women going through treatment just before her so we knew what was coming a month ahead so we could plan.
 
Please email me if you need talk.  I am a good listener even if I can't give you the perfect advice.
 
Bonnie
Bonnie, mom of Heather, age 32, Dx on 9/1/09 TN IDC Stage 1, 1.4 c, lumpectomy, 10/8/09, DD AC & T, 3/9/10 bilateral mastectomy and immediate reconstruction, BRCA 1/2-
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2011 at 7:59am
Cry Angry In august 2011 my 34 year old daughter was dx with BRCA 1 tnbc.  It has been rollercoaster ride since then. I have learned so much and unfortunately , the more I learn , the scarier it all seems.  my daughter has chosen to not research, but take things as they come.  She also knows I am always searching.  She has had a bilat mastectomy and has expanders in , working on reconstruction. She wants no children, so that has not been an issue. Went to oncologist yesterday and now knows she's facing 16 weeks chemo. The dr. said after 5 yrs her survival rate is 95 %  She thought that was so encouraging which is what she needs....a positive attitude.  I almost cried thinking 5 years of absolute hell waiting for the next shoe to drop. i am not a negative person....I am her MOM.
Because of the BRCA1 the next question is removing ovaries.
Now lets compound the problem.  I have three daughters. Two are BRCA1 positive.  My mother-in-law died of ovarian cancer at 44yr old in 1965. The second daughter with BRCA is 33, not married but wants a child. These two daughters are very close and the second one watches the first and tells her constantly to tell her all she is going thru because she knows what she is facing. Even if there is no cancer she will have dm and ovaries out. Just a matter of when. I am living a nightmare!!
 
In 5 months the world has turned upside down
Sorry... I just need to vent and know I'm not alone. I live in a small town where you always put your happy face on.
 
So Kim ,there are mothers out here.  Lets help each other
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2011 at 9:36am
Moms should not have to see their daughters go through this. That being said, Moms are undoubtedly the best support system a daughter could have. Wish mine was here with me, but knowing the turmoil it would cause her, glad she's not going through this.
 
Prayers to all you Moms and your daughters for peace and strength.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HappyGoLucky Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2011 at 10:55am
Dear moms
How horrific, our daughters are ourselves. I feel everything when my daughter has ilness or stress . Pray that we get to the bottom of this mutation and reverse. I can't stand this  Please know that you are in my prayers for restored strength and reversal and sending you comfort and (((((hugs))))).
Love
karen
2/2009 7cm tumor, sent nod. pos. Lumpectomy 3/19/09,a/c dose dense+avastin clinical trial, taxol avastin stopped with pneumonia. 33 Rads 01/2010 ~ reccur 2011 supraclav.and internal mammary nodes. rad
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2011 at 4:06pm
Dear momoftnbc,

I am the mother and I had the cancer. I have a 48 years old daughter and 2 granddaughters.

I was not into research when I went through my treatments. I just had to hold myself together mentally to make it through. Your daughter may be the same way. She is lucky that you are researching and one day will be able to digest a lot of the information for herself. I'm so sorry about the BRCA situation and having another daughter affected. It is true that when our children hurt, we hurt; no matter their age.

Please let me share that I am a 5 year survivor and getting to this point has not been easy. The best advice I know is "One Day At A Time". Bite off small pieces to chew; we can't swallow this in one chunk. Take care and keep posting. We are here for you and your daughters.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote momof tnbc Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2011 at 4:42pm
Thanks for your posts, especially Lillie. I have to hear the 5 years out stories even if its tough. And you are right, she is holding it together and not looking for too much info at this point. 
 
I will keep posting and hope I will be able to encourage others in the future.  For now thank you for the prayers and support.
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