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Support info:Spouse/main support person

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    Posted: Jan 31 2012 at 6:27pm
Hi,

Have seen some articles about support and tips for the spouse/or other main support person
for a person in breast cancer treatment.

Wondered if there would be interest to have a forum topic for:
      Support info for the spouse/main support person and other supports.
      Sharing of things that helped when spouse/main support person was supporting
             the woman/man during breast cancer treatment...........
                  things helpful for the supporting spouse
                  things helpful for the spouse being treated
      Thread where the spouse/main support person can give and receive support info/support.
      Thread from the perspective/experience of the spouse/main support person.
      Maybe spouse in treatment/hx of breast can also share what was most helpful
                    by caregiver spouse to help other spouses.
      What ever may turn out to be helpful/supportive to the spouse/main support person.   
Acknowledge some information related to the above is already within some threads.   

Think personal experiences are helpful.
Will list a few articles to start the thread off.
(Thread for sharing information from any source....personal experience, articles etc.)

Transcript form WebMD Live with Marc Silver, author of "Breast Cancer Husband:
How to Help Your Wife (and Yourself) thru Diagnosis, Treatment and Beyond"
http://www.medicinenet.com/script/main/art.asp?articlekey=53702

From Coping Magazine: When your wife has breast cancer.
                                           5 things you can do to support your wife.
http://copingmag.com/cwc/index.php/article/when_your_wife_has_breast_cancer

Top 10 Ways to Support A Spouse with Breast Cancer
http://breastcancer.about.com/od/supportineveryway/tp/ten_support_tips.htm


The TNBC Foundation has a Helpline at 877-880-8622.     M-Th: 9am-7pm EST F: 9am-5pm EST.
The Triple Negative Breast Cancer Foundation® has partnered with CancerCare to offer free, professional support services to patients, families and health providers coping with a diagnosis of triple negative breast cancer. The TNBC Helpline is staffed by experienced oncology social workers with specific knowledge of triple negative disease. In addition to counseling, TNBC Helpline staff can assist callers in availing themselves of the various other services CancerCare has to offer including, where appropriate, helping patients apply for co-pay assistance, transportation and other social services.



Thank you beyond words to the spouses/main support persons and all family and friends for
the priceless care/support given to us before/during/after treatment .


With caring and thankful thoughts,

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

ps: Initially put this thread under support group forum.
      Since intent was sharing of information, moved the forum to TNBC Talk.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2012 at 6:40pm
Thanks Judy, being a co-survivor has its own set of challenges.  The links you posted are helpful.

David
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cheeks Quote  Post ReplyReply Direct Link To This Post Posted: Jan 31 2012 at 6:57pm
Thanks Judy. I think my husband really could have used this and still can.

Blair
Lump found 11/08
DX: 2/09 @52 TNBC
L. Mast. 3/26/09, SN-, BRCA-,
4.5 cm (post surgical)T2NOMO
Chemo: 4/09-10/09 Taxol x 12,
A/C x 4, No rad.No recon. NED 1/17. New Primary right breast TN, 2/2018.
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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: Jan 31 2012 at 11:37pm

****TIME SENSITIVE****

Posting as a FYI for any one who might be interested.

Just found this link to register for an on line support group for 15 weeks....
starting Feb 1,2012....ending May 15, 2012..................
sponsored by Cancer Care......for caregivers: spouses/partners....led by an oncology
social worker.
TNBC Foundation partners with Cancer Care for the TNBC Helpline.

I do not know any thing more other than above info.
It looks like to register one needs only provide an user name, password, email address.

http://www.cancercare.org/support_groups/77-caregiver_support_group_spouses_partners


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


The CancerCare website has some Podcasts on Care giving.
Wanted to look at those before I posted the link.
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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: Feb 01 2012 at 7:38pm
Addendum to above.
Posting as a FYI for any one who might be interested.


I called Cancer Care today   ( 1-800-813-4673) re: Cancer Care's on line support group for
caregivers: spouses/partners.
http://www.cancercare.org/support_groups/77-caregiver_support_group_spouses_partners

One can join the group after the start date of Feb 1, 2012.
This particular group ends May 15, 2012.
When one registers for the group, there is an opportunity for an optional introduction of one self.


Judy
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 3:57pm
How hard to push?

My wife is in her first cycle of A/C chemo and the docs are telling her she needs to be eating 50+ grams of protein a day.  She is having some nausea despite dexamethasone, emend and compazine and says she just does not feel like eating.  She is not close to the 50 grams per day target on protein intake.  We have the NCI and other cancer diet cook books,  but nothing seems to taste good.  So my question is how hard to push the diet?  Obviously I don't want to be obnoxious, but I also want to her to get her strength back to fight this thing.

What have people found useful in motivating diet? 

David
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 4:50pm

During my first two or three cycles of E/C, I too had no appetite, especially for proteins.  We made up smoothies with frozen fruits and added protein powder to them.  You could also add the protein powder to yogurt or other foods that she can tolerate. 

 
 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 4:54pm
David,

I found when I was going through chemo the first time that I only wanted "white" food, like turkey, vanilla yogurt, bananas.  Nothing tasted good.  Most fruit just tore my mouth and stomach up.  So while you want to eat healthy, go with what she can tolerate.  I've heard someone say all they could eat was a McDonald's hamburger.  Well it's probably not the best choice, but if they eat it, that's good.  I wouldn't push too hard.  This is a tough time.

Could you try an isolated whey protein shake?  I found I like them as they have lots of protein, usually over 30g in one serving.  I'll add a banana, blueberries or other fruit and also some organic cold milled flaxseed (I get at Costco).  It's high in protein and omega 3's.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Dear David,

Very sorry your wife is having a tough time.

I just posted some thoughts on another forum on the board-


warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 9:31pm
I cannot emphasize how awesome I feel the support people are, to try to do what they can for their loved one. Kudos to you all!
I realize that I am actually very angry right now though. Other than coming with me for the initial diagnostics, the surgery and 1 chemo, my husband basically rarely did anything for me. I can remember being so tired one night and I needed to lie down. So I went to bed, hoping to be able to fall asleep. Of course I couldn't doze off. I finally asked him to come and just stay with me, that I really didn't want to be alone, I just needed him to be there at least until I fell asleep.  Well he did that night. But he never did it again, not once. Maybe it was stupid of me not to ask again. But I thought I had expressed my need to not be alone well enough, and he couldn't bother ever again?  Overall, I had no nausea/vomiting. There was one evening though, when I was tossing and turning, and the nausea set in and I had to get up, stay close to the bathroom or at least have a "puke bucket" nearby. I told my husband that I was really feeling sick to my stomach. He said "okay" and rolled over and went to sleep. Just crying over that made me puke even more. I even had to go to my last Chemo all alone, drove myself to and from.
I am angry and hurt all over again. Sorry. Unhappy
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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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: Feb 02 2012 at 10:13pm
Nancy and others,

In retrospect, wish I had started another forum topic at the same time as this one.
I did not mean to be insensitive to those who do not have a supportive spouse or a
main support person.

I just built a new forum topic: Managing without a main support person.
http://forum.tnbcfoundation.org/topic9573_post97110.html#97110
Maybe other members who are/were in a situation without a main support
person can post on "Managing without a main support person"..........
with how they had/tried to manage......and/or how they finally built a support system that
worked for them.

I am so sorry to read of your experience......so sorry you went to your last chemo alone.
And am most sorry for any part my starting this thread had in your being hurt all over
again.

With caring and supportive thoughts,

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


Edited by Grateful for today - Feb 02 2012 at 10:16pm
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Judy,< ="text/" ="" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0">

Thank you, Thank you for starting this thread.  Also Thank You for starting the other thread for those who did not have a support/supportive husband.  Both threads are extremely important for our community.

Nancy,

Please feel to share your anger.  We need to acknowledge when others have let us down and weren't there for us.  Your anger is very real and this forum enables you to get those feelings out instead of keeping it inside.  I'm sorry you had to go through this alone, but now you have us and you'll never be alone again.  I know those that haven't gone through what we have may not understand.  I look at us as being wiser and more compassionate than most.  I hate this cancer and what it forces us to endure.  Just surviving makes us look at life so differently.

Hugs,

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2012 at 10:40pm
Dear Judy,

I just posted on another thread 


that there should be no sorry’s on this board...

so please understand that you are doing a marvelous job for all of us and please no reason for sorry...

however, I must confess that when we spoke on the phone last week you promised me that you had a cure for my progressive baldness...at least that’s what I wanted to hear you say...Smile so I must inform you that I am still balding and if you want to say “Sorry” for that I will accept your apology but to be honest, I would prefer a full head of hair.

Judy, please don’t be so hard on yourself.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Hi David,

Think you know the answer to nausea-chemo- diet- protein intake....is the usual answer we so
often find on the forums..........everyone is different.
The good news is that with trying different things and working with one's providers a better situation
is frequently possible.

Will share some of my thoughts and what I found helpful.....pick and choose.... and try different things
you and your wife think of.......

(Some of these things you may already be doing. Will mention all that come to mind just in case.)

Nausea: Meds per wife's MD plan of care.
               Keep a daily record until one knows what to expect and do.
               Put down what was eaten or done on chemo day. Chemo day meds.
               List each days symptoms.....meds taken....responses.
               Review above with provider and keep adjusting until best plan is found.
               Be aware that some of first chemo reactions could be result of both chemo and
                    stress/anxiety of having 1st chemo.
              Symptoms may be less on 2nd chemo due to any adjustments made.

General thoughts:
        A healthy diet with recommended grams of protein of course is ideal when tolerated.
        Am sure not everyone is able to eat the recommended grams of protein.......it's good
               to know what the goal is when possible.
        Some need to eat whatever they can tolerate during chemo.....just to get the protein
               and calories.   After chemo, one can return to a "healthier" diet.
        Before chemo, I had meat maybe 4 times a year at holiday dinners.
               Then, ate chicken and turkey during chemo for more protein.      
               Realize some people might feel it is better not to eat meat and can manage a good
                   protein intake....that is great.   I found I needed   to add the meat to increase the
                   protein in my diet during chemo.
        Any fluids and any food is better than none.
        If one has already consulted with a nutritionist, one might consider a call for immediate
               recommendations and then consider f/u appt as needed.
        The person on chemo "knows" nutrition is very important and is trying very hard to eat.
               It is hard to explain when one has absolutely no appetite.
        It may be helpful to not emphasize to the person on chemo to eat better.......one knows that
               and is trying so hard to eat.
        It may be helpful to help the person try different things.... and the things one tolerates may
               change thru out the chemo treatments.                 
        One may find that one is able to eat and drink better the second week. Thus, do the best
               one can the first week, knowing one will eat better the second week.
        Consider asking your wife .........what do you think would appeal to you today....
               is there something you would like to try even if it's only a small amount.

These are some things I did/tried that were helpful.
Again, everyone is different....pick and choose and adjust.....and add your and your wife's ideas.

Mouth: Keep mouth in a clean refreshed condition.
               Mouth case as directed by provider.
               I did frequent salt water swishes.
               Biotene products are more expensive than some others. I felt I was worth using these
                  products during chemo.   Used Biotene toothpaste, Biotene MouthWash and the
                  Biotene gel (the gel especially helped keep oral mucosa moist).
                 Biotene has a bio-active enzyme system.       
               Avoid oral products with alcohol.

Fluids:   Find the fluids that one tolerates best.
               Frequent small amounts if larger amounts not tolerated.
               Sometimes the temperature can make a big difference.....try cold, warm, room temperature
                      and see if any temperature is tolerated better.
               Try usual fluids and explore new ones until one has fluids that are tolerable/enjoyable.
               Water, ice cubes (that have been melted a bit first), tea,   ginger ale, pear juice,
                      soup broths,   frozen fruit popsicles, milk,   milk-ice cream shakes if tolerated.
                      coffee
                      Try any fruit juice that sounds appealing....maybe diluted at first.
                      Yogurt/ice/with +/- fruit smoothies.
                      If MD and nutritionist recommend, Ensure and Boost type product   OR get a
                            recipe for healthy shakes/smoothies from the nutritionist

Food:   Nutritionist I saw said the only time she recommends potato chips is for chemo patients
                   with poor appetites.
                   She recommended having 5 potato chips prior to a meal.   She advised the
                   "healthier" potato chip.
                   ( She recommended Cape Cod potato chips. Their web site shows their chips in
                    Michigan:   http://www.snyderslanceproductlocator.com/capecod/#
                    She also recommended ginger snaps.
             I found that some days I could eat better than others.
             Things I found easier to eat with no appetite:
                    oatmeal, english muffin, peanut butter,
                    chicken or turkey broth:
                         various ways. plain.   with added chicken or turkey, peas, carrots.
                         sometimes part skim mozzarella cheese on top.
                   chicken on toasted english muffin and melted cheese on top.
                   cottage cheese and pears.
                   yogurt.
                   toasted cheese sandwich.
                   (latter half of chemo, could not tolerate the yogurt and cottage cheese)
                   Tabatchnick    Split Pea Soup   (frozen soup pouches in frozen cabinet
                         section of store).   If tolerated, this has 13 grams of protein and 13 grams fiber.
                                    regular: 380 mg of sodium.    low sodium version: 50 mg
                                    ( had to use a few shakes of salt in the low sodium version for taste)
                   mashed butternut squash.
                   tapioca.
                   towards end of chemo: asparagus.
                   cinnamon was main seasoning I liked.
                        (if your wife likes certain seasonings, you could try a very little with her food....
                             and if tolerated use the amount she likes.)

If you can start with some things that your wife enjoys and can tolerate, then you can add as
time goes on. Would anticipate you and she will find a good food plan that will be good for
her during chemo. Sometimes, it takes a little time and trying different things.

Again, everyone is different. Pick and choose if anything above sounds helpful.
Please disregard anything that you do not agree with or you feel will not work.
You and your wife will figure out the best food plan for her.

With caring and positive thoughts,

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

Edited by Grateful for today - Aug 16 2012 at 12:57am
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Thank you all, these are helpful suggestions.  Appreciate the thoughts.

David
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2012 at 9:38am
Dear David,

I think one of the most important things that will help ensure as good a chemo experience for your DW is the love and support you give her. You may have noticed on other threads that some partners/husbands ‘disappear’ during times of hardship.

We admire every person who steps up in a supportive, loving role during this stressful journey. It is clear that you are in that camp and, yet, somehow manage to help us with your insightful posts while helping your DW.

We appreciate your efforts and wish you both the best as this arduous treatment plan continues.

The two best things about chemo is that hopefully it will kill the cancer and secondly, it will end.

Unfortunately, the various chemos are poison and they often cause difficult side effects. Some day things will be better, we hope. In the meantime, it is what it is, and your support is so very important. The days may become even more difficult as the months go on. Please know and let you DW know that we shall always be here, for both of you. Please dig deep, try your best to stay strong and try to find the beauty in each day.

warmly,

Steve




Edited by steve - Feb 03 2012 at 9:39am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Philly526 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2012 at 10:26pm
I am so sad and don't know where to turn. My daughter was diagnosed on 1/18, had a bilateral mastectomy on 1/20, and was given the pathology by the surgeon on 1/25. The triple negative diagnosis was basically just one more piece of data until we did some research and saw the oncologist on 1/30. The cancer is stage IIB with one lymph node involved. She doesn't even have all the drains out and she is in the hospital with pneumonia. The oncologist is recommending TAC chemo scheduled to start on 2/20. My head is spinning and I can't stop crying. Christine is 42.  I feel lost. 
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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: Feb 09 2012 at 12:30am
Phillly526,

Hope you will find support and information on this site as so many do.
Know that many find the initial diagnosis and beginning treatment time the most difficult.
Know that most with TNBC do survive,
Know when reading the posts that many come to this forum when first diagnosed ( or the
caregiver of the newly diagnosed )....then after treatment many do not post as they are
too busy living their lives........then there are some who do return to the forum site for
support and information when they have a recurrence. There are many, many survivors/
thrivers out there not posting due to busy lives

You may be interested in the forum topic "moms of TNBC daughters":
       http://forum.tnbcfoundation.org/any-moms-of-tnbc-daughters_topic9126_page1.html?KW=daughters
You might consider posting both here on this forum and also on the forum for moms of tnbc daughters.

When you are ready for more info on TNBC, look at the TNBC brochure on the website:
   http://www.lbbc.org/Understanding-Breast-Cancer/Guides-to-Understanding-Breast-Cancer/Guide-to-Understanding-Triple-Negative-Breast-Cancer
( about the 6th line from the bottom, click on download the brochure)

There is a group 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).
They also have a newsletter.
Does not appear that they have an online forum.
The group: MSDBC. Mothers supporting daughters with breast cancer.
Phone: 410-778-1982.
http://mothersdaughters.org
Lillie Shockney RN who is well known from the Cancer Center at Johns Hopkins started this group
with her mother.
You may like to consider giving this group a phone call.

With caring and positive thoughts to you and your daughter,

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


Edited by Grateful for today - Feb 09 2012 at 12:59am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mindy555 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2012 at 1:47am
Dear Philly526,

I just wanted to extend my sorrow for yours.  I can feel your broken heart, the lost feeling and not knowing where to turn - especially this early on.   I hope you find Judy's post and excellent resources helpful.

I feel guilt and sadness for passing the BRCA gene on to my own daughter... nothing even remotely close to what you're going through.. so I apologize if it sounds like I'm comparing...  I'm absolutely NOT... that would be absurd.   As a mother of a daughter I adore, my heart sincerely goes out to you...

It has to be an horrifically difficult time... I pray it gets better for you very soon.  I pray your daughter recovers swiftly and moves as smoothly as possible through a successful treatment.  I wish no one had to face TNBC... although, as Judy said, most survive this disease and go on to live a long, meaningful life.  And I'll add many of us realize a renewed appreciation for the beauty in each day.

With many blessings for you and your dear daughter,
Mindy


Edited by mindy555 - Feb 09 2012 at 3:04am
Dx July 2011 56 yo
Stage I IDC,TN,Grade 3
Grew to Stage IIa- No ev of node involve- BRCA1+ chondroid metaplasia
Daughter also BRCA1+
Mass grew on Taxol
FEC 6x better
BMX 3/19/12 pCR NED
BSO 6/2012
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Philly526 View Drop Down
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Joined: Feb 08 2012
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Philly526 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2012 at 9:44pm
Thank you so much Judy. I will definitely check out the links you provided. I have already been in touch with MSDBC and they are in the process of matching me to a volunteer mother.
 
I very much appreciate the positive input I have received. It seemed all I could do was focus on the very worst outcome. Thank you again for you work on this site and for responding to me with such hope and caring.
 
Love and Light,
 
Linda
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