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Quick update

Wednesday, September 29, 2010

We sent all his records, images, etc. to a hepatic oncologist at Mt. Sinai for a second opinion, but so far no word other than, "The CT from March looked good [that was the only one I had on hand to send him - the others come from other hospitals] but a lot can happen in seven months." No kidding.

I try to focus on the present and not "awfulize" too much about the future. My daughters are both here (although the younger one goes back to college next week) and we all sort of prop one another up and take turns giving in to complete collapses.

Other than that, two things keep me going: the first is that, at 55, I've lived enough life to know that no matter how dreadful it seems, things do get better, and one day after the other broken hearts, like broken bones, do knit even though at the time it feels impossible. The other thing that keeps me going is the gifts that you guys give me with your notes and caring. It's amazing how much difference a kind word can make, and I'm am so blessed to have you all in my corner.

My daughters bought me a fancy cell phone - apparently my old one, which i used to make and receive calls, was insufficiently advanced. Now I can access the Internet, have spoken directions to get me from here and there (if I should ever go anywhere more complex than the grocery), take pictures, make movies, record symphonies and dozens of other things. Now if I could only figure out how to make and receive telephone calls...

  
  Member Comments About This Blog Post:

CINDYC53 10/10/2010 1:37AM

    I clicked on your page almost by chance (but nothing is really by chance, is it?) - after seeing your name on my friend feed. And I have gathered bits of your story together and my heart is full for you. I have no advice for you - but do want to say thank God for your daughters and the strength of family leaning on one another.
Your perspective has helped me work on my own during a scary/uncertain time in my family. My daughter is pregnant (5 mo) and the baby is in trouble. Long story, but he may not make it, and if he does, he may have problems. It's sometimes to "focus on the present" and not "awfulize" (such a good word). Reading your blog made me feel stronger. Thank you.
I'm going on to read your next blog now. Sending you love from yet another spark friend - Cindy

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JRSWHIMSY 10/1/2010 8:44PM

    I'm glad you're all hanging in there. I hope you can get some other medical records to send off to the docs

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LINDAKAY228 10/1/2010 7:07PM

    Thanks for letting us know what's going on. I know the waiting must be so hard to bear. I hope you hear something positive soon. I'll keep you all in my thoughts and prayers!

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MORTICIAADDAMS 10/1/2010 4:54PM

    I'm glad that you have the support of your daughters. You are very strong and you will get through this.

I still don't have a cell phone and have no idea how to work one. No real need or desire for one either. LOL.

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DANCINGGARDENER 10/1/2010 11:08AM

    Daughters... how amazing they are. I am so happy you have a couple, otherwise I'd have to lend you a couple of mine! They can help you get through a lot, can't they?

Keep on keepin' on with your bad self!
love & more love, Maud

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PENNYAN45 9/30/2010 11:53PM

    It's good that your daughters are there with you -- and that they are giving you modern tools to help you out.

I am praying for you and your family.

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STARLASUE 9/30/2010 7:47AM

    Keep on keeping on - you are doing it. It is a long journey you have been on. emoticon emoticon emoticon

You'll get used to the phone and then you will wonder what you ever did without it!

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SUZYMOBILE 9/29/2010 10:21PM

    It's good to get updates from you, about any old thing. I always try to check your page to see if there's a blog. It's also great to hear that you can find some relief in things like Zumba and a new toy.

Thinking of you,

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JANEDOE12345 9/29/2010 5:12PM

    Keep giving us updates. So many of us are keeping you uppermost in our positive thoughts and it is helpful to know what's up...and it sounds a little better.
Stay strong, stay nice, and stay positive!
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Pam

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C11ELF16 9/29/2010 11:48AM

    I will keep you in my thoughts and prayers. So glad you have those beautiful daughters there for you. Take care. ((HUGS))

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LOULOUBELLE2 9/29/2010 10:43AM

    So glad that you have your DD"S with you. You are a strong family, your closeness will see you through. Hopefully you'll get the results from sending out those test results soon.
You are thinking positive and still have a sense of humor regarding that phone. They can be intimating.
My prayers and hugs go out to you and yours. We all care.
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BUNNYCATS 9/29/2010 9:36AM

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HIPPICHICK1 9/29/2010 9:09AM

    Yes a lot can happen in 7 months. Here's hoping for the best. Prayers, healing and loving thoughts coming your way, my dear one.
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BETHGILLIGAN 9/29/2010 8:39AM

    You and your family continue to be in my prayers!! Please keep us posted and good luck with the phone!!

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Friday, I guess

Friday, September 24, 2010

It's all starting to run together day-wise. No medical news.

My husband is dying and I'm signing up for a Zumba class. I strongly suspect I'm losing my mind.

  
  Member Comments About This Blog Post:

BOOKAYB 9/27/2010 2:03PM

  I strongly suspect the release will be SO good for you. I'm hoping you find a peaceful place in your heart very soon... Blessings.

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MORTICIAADDAMS 9/26/2010 4:35PM

    Actually the exercise will be good for you and all caregivers need some time for themselves.

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PENNYAN45 9/26/2010 4:58AM

    Zumba sounds like a good idea for you right now.
Sending thoughts and prayers for you and your husband.

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STARLASUE 9/25/2010 10:42AM

    Nah - it is still there - maybe a bit 'off', but there. I hope the Zumba helps you find a few minutes of stress relief.

Love and healing blessings
Sue

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JRSWHIMSY 9/24/2010 8:39PM

    Sanity is over-rated my dear. Find yours in Zumba. Or find your insanity there. And spend every other moment with your darling husband *hugs*

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BETHGILLIGAN 9/24/2010 8:27PM

    Sanity is relative! You need to take care of you so you have the strength and spirit to share with him. You are both in my prayers.

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JANEDOE12345 9/24/2010 8:25PM

    Everybody already said what will help you remember to take care of yourself. Whatever little shred of comfort you can find right now is absolutely necessary for dealing with the changes you are going through.

Do you know that I used to have a set of those deely-bopper thingies that were two springs with St. Patrick's Day shamrocks on them, and when my children were hard for me to deal with (divorced mom, pre-Prozac), I used to secretly put them on while I cleaned house. Something about those green plastic shamrocks bouncing around above my head made me smile - and that small joy would sometimes be all I had on a bad day.

So go do Zumba, and smile at yourself.

Be bouncy,
Pam


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SUZYMOBILE 9/24/2010 8:05PM

    Not crazy at all! Some pour all their energy into work in these circumstances. You need to do something outside of the house, and what better than Zumba?!

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LINDAKAY228 9/24/2010 7:20PM

    No you're not crazy and you need something to help you deal with the stress and take care of yourself so you're better able to take care of him. Caregivers have to take care of themselves! I know how hard it was with my mom.

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SHERYLDS 9/24/2010 7:11PM

    It's not crazy...you do whatever you need to do to keep it together. emoticon

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SLIMMERKIWI 9/24/2010 6:44PM

    There is NO WAY you are losing your mind. You are surviving! You are taking time out for you to re-energise so you can take better care of your husband. You are learning new skills to help you with the grieving that you are already going through. Your body AND mind will thank you for it, and I am sure that you husband is really pleased that you are doing this for you, too!

Enjoy those classes :-)

Take care,
Kris

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LUNADRAGON 9/24/2010 4:22PM

    emoticon emoticon emoticon emoticon

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DANCINGGARDENER 9/24/2010 4:18PM

    Sanity at this point would be counterproductive... take two Zumbas and call me in the morning.
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Thanks, and a small update

Wednesday, September 22, 2010

It continually amazes me: the outpouring of love and support from virtual strangers, the prayers said, the candles lit, the positive energy sent. It is absolutely overwhelming, and I believe I owe a lot of my ability to hold up here to you guys and your faith.

Thank you, from the bottom of my black little heart, and God/dess bless each one of you for your help in this time of trouble. Don't ever think you can't do anything to help - just being there is an amazing source of strength for people who have just about run out of their own.

ANd on a practical note, I've discovered that when actual in-the-flesh friends say, "Just tell me what I can do to help", you can do just that! I was so consumed with worry over fire wood (winter's coming, and soon, up here), hay in the barn and crops in the fields, repairs that absolutely positively have to be done ASAP. I turned to my local best friend and the best politician/delegator I ever knew, and suddenly everything is taken care of. Amish people are cutting wood in exchange for leftover hay. A handyman is doing handyman stuff because he owes the friend money (no charge to me.) Food is showing up. A half dozen warm brown eggs. A big bowl of beets and potatoes. I could (and do) cry.

I don't remember it ever being like this in the city. It's my impression, right or wrong, that country people pretty much leave one another alone unless you need them, then they're there in force. Once again, God/dess bless each and every one of them.

For what it's worth, John hasn't looked and felt this good in a while - certainly before he was taken off to the hospital. Tonight I fed him a local free-range, no antibiotic etc chicken, stewed in Chinese herbs, in a white sauce with local peas over some nice brown rice. You can feel then nourishment - above and beyond the vitamin and nutrient counts - in every bite.

Meanwhile, I'm pursuing the "second opinion" deal at Mt Sinai in Manhattan, full bore. Probably Friday, by next Wednesday at the latest, he'll have a complete new work-up by one of the best hepatic oncologists in the country, if not the world.

I am so blessed.

  
  Member Comments About This Blog Post:

STARLASUE 9/25/2010 10:46AM

    I knew you were surrounded, protected and loved. Thanks for giving your friends and neighbors the gift of being allowed to help. It is something we all need to do when someone in our circle of love is hurting. It is a win-win for all of you this giving and recieving cycle of care.

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MORTICIAADDAMS 9/23/2010 10:54PM

    Your friend sounds like a Godsend. Bless her and you. Sending prayers and hugs.

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JANEDOE12345 9/23/2010 5:14PM

    Just saying hello and sending good vibes to you and yours.
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Pam

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LEMONSMILES 9/23/2010 3:47PM

    Dear Scooter: What can we all say to mend a broken heart from sadness and shock.I haven't read your blog before but I am sure all of God's love and helping soul does indeed bless you both during this deeply sad period in both your lives. I have had 2 kidney transplants, and am now waiting to see if I have cancer of the kidney for the second time.Thank goodness I had the cancer in one of my old kidneys. I look at life in a very different way than others. I am sure you do too. These sorts of things are totally life changing - in a very spiritual way. I had my first when I was 21 then again 10 years ago when I was 38. Not easy. I was lucky to of had been born 3 times...if you follow me. As for the food my darling, you deal with that when you can. Yes, it is a realisation that one needs to look after one's self - at all cost - but when you are ready...it is understandable. Our prayers and energy from all over the world are with your dear husband, John and his obviously beautiful 30 year soul-mate and partner in life - you! My strength, and may God be with you dear Scooter. Victoria xx

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SHERYLDS 9/23/2010 2:51PM

    I'm glad your local angels came out in full force to lend a hand. My warmest wishes to you both. Know that many of us will be whispering your names in their prayers.

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LINDAKAY228 9/23/2010 10:45AM

    I'm so glad you are getting some local help to take a lot of worries off of you so that you can focus on John. I'm also glad that he's looking better right now. I hope the second opinion goes well and he can get a transplant and have many more happy years with you. You will continue to be in my thoughts and prayers.

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DANCINGGARDENER 9/23/2010 8:19AM

    Just reading how folks are helping you, helps us. Thank you so much for such a reassuring assessment of our species. I grew up out in the country but now am a die-hard village dweller. I can tell you that city mice are just as fast to help if asked.... it is the asking part that is so gosh darn difficult.

I just wish I were one of your in-your-face friends... sigh, I'll just have to let those luckier than myself feed and love you in person. Blessed Be!

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(had to fix my spelling)

Comment edited on: 9/23/2010 8:25:36 AM

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JRSWHIMSY 9/23/2010 8:06AM

    It sounds like you are already doing what many people don't - telling people what you need. Many folks in your position are overwhelmed but don't ask for help so as not to be a "burden". And those people's friends are feeling helpless not knowing what to do, their words seeming to fall shallow. You're blessing other people by giving them a tangible way to help, just as they're blessing you.

Keep the faith my friend, from wherever you get it. I'm glad you're surrounded by so many good people!

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SLIMMERKIWI 9/23/2010 2:40AM

    Having been brought up in a rural area, I would have to agree about the "common folk" sticking by their fellow man and helping when help is needed!

I am glad that they have stepped up to the mark:-)

Kris

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SUZYMOBILE 9/22/2010 9:47PM

    I'm so sorry I've been out of touch! How wonderful that you have a bit of hope to grasp! I can't help but think everyone's good thoughts and prayers are bringing better things your way.

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2BMYOWN 9/22/2010 9:44PM

    Awesome! I'm so glad everyone is rallying 'round you guys when you need it most!

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HIPPICHICK1 9/22/2010 9:20PM

    It's awesome that the Goddess works in many ways and with many folks to help you through this rocky time.
Brightest of Blessings!!
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ALICIA214 9/22/2010 9:10PM

 

It is amazing what a cry for help can bring, it restores your faith in human nature, and WOW the members on this site are truly wonderful, and I
personally never under estimate the power of prayer.
I hope you and your Husband will live a Happy Long life. God Bless.

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PUDLECRAZY 9/22/2010 9:10PM

    emoticon

Wishing you the best!

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LOULOUBELLE2 9/22/2010 9:07PM

    Miracles do happen and you and your DH are experiencing them. May God (God/dess) continue to bless you as your Sparks friends continue to pray for Your and your family. AND Country people do take care f their own. City people to do I believe, but in a different kind of way.
Hugs, Lovely Lady.

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MERRYWON 9/22/2010 8:56PM

    It's awesome to have good Christian friends!

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Another unknown

Monday, September 20, 2010

The "inoperable tumor" that made him a non-candidate for a liver transplant appeared virtually out of nowhere. In fact, it appeared following a request for an MRi on a Friday that wasn't fulfilled until the following Tuesday. Reason? Radiology had it listed as already having been done that Saturday morning.

I'm the last person to be a Conspiracy Theorist or anything, but I do know that people make errors. So I sent this whole package of information off to my favorite doctor, the one at Mt Sinai, and he said, essentially, "Hmph. Give me a minute" Five minutes later I got an email from another guy at Mt Sinai who is apparently the top liver cancer doctor in the US, bar none, and he offered to review the case for me if I could get him the CDs with the CT scan with contrast. Rather than send the most current ones (that I have doubts about) I sent the ones from two weeks ago, at our original hospital. He should have them tomorrow and by this time tomorrow night, we should know a)if my husband has liver cancer and b)if there's anything to be done about it.

Is this a bereft woman grasping at straws? Maybe, sure. My husband is my soul mate, and we've had thirty years together. I love him well beyond reason. Yes, I will survive without him if I must, and I"ll do a fine job of it, but I'll be damned if I'm going to lose him to a clerical error.

Tune in tomorrow.....

  
  Member Comments About This Blog Post:

BETHGILLIGAN 9/23/2010 8:16AM

    Prayers are with you and your husband!

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SUZYMOBILE 9/23/2010 7:08AM

    The moral of the story: Never, ever, ever give up. Wow, are you ever doing the right thing!

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STARLASUE 9/22/2010 8:51AM

    Grasp baby, grasp! Never give up advocating for him or you. It is harrowing but worth it. Give it all you got. Prayers and love continuing to flow your way!

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PENNYAN45 9/22/2010 12:55AM

    Our family has had a miracle come from the doctors at Mt. Sinaii. I hope you do too.

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GRAMMIE1959 9/21/2010 12:30PM

    Medical cruelty...Keep us posted PLEASE.

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I pray for a full measure of strength for you and yours as you navigate this turbulent time.

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Vivian

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SHERYLDS 9/21/2010 12:21PM

    Hang in there. Wishing you both all the love and strength to get thru this. emoticon

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DANCINGGARDENER 9/21/2010 6:42AM

    Strawgrasping is the art of the irrationally in love. He has one lucky soul to be mated to yours. Rock on with your bad self.

love you, Maud


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HIPPICHICK1 9/20/2010 9:24PM

    My thoughts are with you and your family. I'm sending you strength and positive vibes, my friend.
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MORTICIAADDAMS 9/20/2010 9:07PM

    My prayers are with you. Hoping for the best.

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JRSWHIMSY 9/20/2010 8:58PM

    Good God woman, yes! Grasp at all the straws you can find and if you can't find any, make some. There is always hope, if only the smallest glimmer.

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MTNGRL 9/20/2010 7:43PM

    Prayers are being said for your husband and you from here in WV. May God's healing touch reach out towards him. May the physicians use all of their God given skill. I pray that paperwork does not hinder anything positive. Sending big hugs to one Spark from another.

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LINDAKAY228 9/20/2010 6:50PM

    You are doing absolutely the right thing if you have doubts to get another opinion. I have not been in your shoes, so I'm not going to say I know how you feel, but I do know that it must be difficult beyond understanding to face the things your facing. You will remain in my thoughts and prayers (both of you). I hope the second opinion will be better than the first. Sending a great big hug to you.

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SLIMMERKIWI 9/20/2010 6:43PM

    I would be inclined to send the current one you have doubts over also, and explain your thoughts on this one. Sometimes tumors can grow VERY quickly and two weeks CAN make a difference.

I'm not wanting to put the frighteners on you but feel that this is important.

Hope the outcome is good!

Kris xx

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LOULOUBELLE2 9/20/2010 6:43PM

    We find miracles any where we can...I hope that this is one for your DH. Prayer is powerful and you have a community sending up good thoughts for you. We may not be in Syracuse, but God answers prayers from all over. Keep the faith, (even though you claim you don't), take care of yourself, so you can be strong for your DH...sounds as if your doing a awesome job of taking care of him.
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Comment edited on: 9/20/2010 6:48:39 PM

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SCOOTER4263 9/20/2010 6:34PM

    I hope we'll find out tomorrow. I feel like I"m getting effing whiplash.

Comment edited on: 9/20/2010 6:40:09 PM

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JANEDOE12345 9/20/2010 6:31PM

    Does this mean he may still be a transplant candidate?

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Bad news - very bad news.

Friday, September 17, 2010

SO, it seems that after all this poking, prodding, perforating and peering into every square inch of the poor man, my husband is not a candidate for transplant after all. We've been in one hospital or another for two weeks now, and finally they're sending him home. He could live a couple months, a couple weeks, a couple hours. Whatever. We're going home.

I have no idea when or even if I"ll be able to face the loving community here. I hope I can bring myself to be back - if I do, it'll probably be under a different name. I don't know anything right now except that I'm grateful for all you guys have given me. And I don't have any intention of using this as an excuse to either drink myself into oblivion or eat my way into a new size range (unless its smaller.) I do know I have to take care of myself, and I intend to do that. As soon as I figure out how.

Many, many blessings.

  
  Member Comments About This Blog Post:

LUNADRAGON 9/24/2010 4:24PM

    Friend, I am sorry to hear all you are dealing with. My prayers are with you and yours... emoticon emoticon emoticon emoticon emoticon emoticon

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JRSWHIMSY 9/20/2010 6:05PM

    *hugs*

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INBRAZILFORNOW 9/18/2010 11:40AM

    Sending love, prayer, thoughts to you and your husband. We're here for you always. emoticon

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SLIMMERKIWI 9/18/2010 6:09AM

    I am sorry to hear of the seriousness of your husband's condition! Remember, we are all here for you AND for him!

I have done a lot of Terminal Caregiving in patients' own homes and understand the many emotions that you will both be going through. Please ensure that you have supportive people around you and that you have time out occasionally for yourself. This is so you can be a better support to your husband. If you haven't already made contact with them, Hospice can be a very good support system and one I would strongly recommend!

Take care,
Kris



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MOODY9 9/17/2010 11:30PM

    You are in my thoughts and prayers! emoticon

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DASEEMAN 9/17/2010 11:14PM

    Many thoughts and prayers for you and your family.

Deb

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YATMAMA 9/17/2010 11:12PM

    Our love and prayers are with you and yours.

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BUNNYCATS 9/17/2010 10:40PM

    emoticon emoticon emoticon emoticon emoticon

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MOMFAN 9/17/2010 10:26PM

    Hugs and prayers!

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SUZYMOBILE 9/17/2010 10:20PM

    You've been through such an ordeal already, this just doesn't seem FAIR!! You must feel like raging or shaking your fist or crying or just hiding. But you will, somehow, get through this, even though you might not know how right now.

Know that all of us are here to just BE here for you, however we can. emoticon

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L*I*T*A* 9/17/2010 9:48PM

    so sorry to hear of your problems......
keeping you and yours in my thoughts and prayers.............
blessings and hugs........lita

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PURPLELVR7 9/17/2010 9:30PM

    My prayers will be with you and your family, may God guide you and give you the strength to get through this journey.

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LINDAGRAVEL 9/17/2010 9:07PM

    We are here for you

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PUDLECRAZY 9/17/2010 8:58PM

    I am so sorry to hear this! Sending healing thoughts and prayers to your husband and to you. This is hard news, and I understand your wanting to pull in and find the ways you need to cope. Please know that we are all here for you. If you do come back with a different name, I do hope you will let your friends know it is you. We may all be 'virtual' friends, but there is real caring here. I will be worried about you.

Sending love and hugs,
Chris

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AGASSIFAN 9/17/2010 7:42PM

    We will be here, whenever you need us...

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STARLASUE 9/17/2010 7:29PM

    No words, my friend. Sending lots of prayers, love and energy. emoticon emoticon emoticon emoticon emoticon emoticon

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JANEDOE12345 9/17/2010 6:17PM

    so sad for you,
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Comment edited on: 9/17/2010 6:18:20 PM

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DANCINGGARDENER 9/17/2010 5:45PM

    This sucks so hard. You are strong but what a futile situation to have to waste your strength on. I am speechless with frustration for you.

Hang on. Do what you need to do to protect yourself. Shake your fist, cry into a pillow, howl into the night, bay at the moon. Laugh at little things. Forget the pain for a minute or two.

I will watch for your amazingness to shine through any new username you might use. Come back soon.

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SOULCOLLAGESUE 9/17/2010 5:44PM

    I'm with you in so many ways right now. I'm going to SparkMail my e-mail for SoulSister support, just in case you cannot bring yourself back to this community-at-large - which is valid for each of us at times. I'm soooo sorry to learn about the strains you and your husband have been under, and the challenges yet to face.
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JRIMM4 9/17/2010 5:05PM

    I am so very, very sorry that you and your family are going through this. I will keep you all in my thoughts and prayers and I do hope that we will see you again.

JR

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MORTICIAADDAMS 9/17/2010 5:04PM

    I am so sorry!! You are a strong woman and the courage you have used to get you this far will be sufficient to get you through this as well. I am sending prayers.

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SHERYLDS 9/17/2010 4:45PM

    I wish you both all the love and strength you need during this time. Know that I'll be keeping you both in my thoughts and prayers.

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DALMOMOF3 9/17/2010 4:43PM

    oh sweetie I am so sorry, nothing we can say will help ease your pain, I will keep you both in my prayers and hope you will be blessed with as much time together as possible. Hugs

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STARTINGALLOVER 9/17/2010 4:41PM

    My thoughts are of you both in this time.. you are there for him and that is all you can do. You love each other and that will carry you through whatever you are facing. My prayers are with you..and I am sending you thoughts of love as well. We will see you again friend.. we will see you again. We will be here..waiting for you..
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HERE2BME 9/17/2010 4:38PM

    God bless you and sending you a prayer.

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KIMBERLEY60 9/17/2010 4:34PM

    I am so sorry. I'm sure this is unbelievably disappointing to you. Take care of yourself. Love and support each other. Great each new day and live it to its fullest. emoticon emoticon

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IMREADY77 9/17/2010 4:32PM

    I'm so sorry to here that. I'm sending white light and love ya'lls way. emoticon

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