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I need some help for my nine year-old nephew diagnosed with an aggressive cancer.
myself | May 3, 2012 | proud American in Canada

Posted on 05/02/2012 10:02:21 PM PDT by proud American in Canada

My nine year-old nephew has been diagnosed with Adrenocortical carcinoma. My sister lives near Madison, Wisconsin, and is seeing a doctor there for him. He is on mitotane and probably some other drugs I'm not aware of.

Apparently the prognosis is not good, like a one-in-five chance of making it through five years. A friend of mine mentioned the Children's Hospital in Philadelphia; apparently one of the best pediatric cancer specialists works there.

My sister is doing everything, and I mean everything. Supplements, massage, Reiki therapy, in addition to everything the doctors recommend. She also has him enrolled in clinical trials.

Now, I learned today that the doctors have made three massive mistakes--mistakenly diagnosing him when he was a toddler (and had pubic hair, muscles, and was beating up his older brother). In 2005 my sister and her husband were told they had tested him for Cushing's disease (?), or some other disease, when they had not. Then the doctors took an ex-ray in 2010 and missed the tumor (the size of a cantaloupe when they took it out a month ago; it's now metatasized into his lungs, although the last round of chemo seems to have shrunk the nodules a bit.

They're going to continue chemo, etc., as long as progress is made, otherwise; they're going to let him enjoy what time he has with his friends and family.

As a trained lawyer, I am sorry, but these mistakes over the years are lawsuit material. However, that is for another day. Not now. Now, the goal is to make him one of the 20% who live.

I know there so many Freepers who are smart and educated and I'm hoping there are some doctors or researchers, people out there who understand this.

I live in another country and am extremely emotional about this; it's affecting my work and sleep, although that is not important.

When I called my dad to say goodnight tonight (he lives right next door to them), I suddenly thought: Free Republic! I must ask for their advice!

In any case, if anyone has any advice or knowledge about this, I would really appreciate hearing from you.

I'm about to commit one of the cardinal sins of FR, posting and kind of running. It's really late here and I have to go to work, but I know I won't have time tomorrow. I'll stay up for another half hour or so and then check in tomorrow.

In any case, I would appreciate your prayers.

*posting while tears are running down my face*


TOPICS: Chit/Chat
KEYWORDS: adrenocortical; advice; pediatriccancer
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Any information or advice, and of course, prayers, would be very welcome. Thank you so much.

Julie in Canada

1 posted on 05/02/2012 10:02:40 PM PDT by proud American in Canada
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To: proud American in Canada

Prayers for your nephew!


2 posted on 05/02/2012 10:10:57 PM PDT by CitizenUSA (Why celebrate evil? Evil is easy. Good is the goal worth striving for.)
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To: proud American in Canada

Your nephew and family will be in my prayers. My only advice from my experiences with loved ones who had cancer is to find and go with the best hospital for this specialty you could possibly afford. Nothing less is acceptable.


3 posted on 05/02/2012 10:11:55 PM PDT by Ronaldus Magnus
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To: CitizenUSA

May The LORD heal your nephew, and give you and your family peace, In Jesus Holy Name.


4 posted on 05/02/2012 10:15:28 PM PDT by Bellflower (The LORD is Holy, separated from all sin, perfect, righteous, high and lifted up.)
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To: proud American in Canada

I know of Sloan Kettering in NY, Loma Linda Medical Center in So Cal and I believe that there is also a great children hospital in Houston along with the Mayo Clinic in Rochester, MN.

Prayers for him, his parents, and the rest of the family.


5 posted on 05/02/2012 10:18:34 PM PDT by notpoliticallycorewrecked (According to the MSM, I'm a fringe sitting, pajama wearing, Freeper)
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To: proud American in Canada

Prayers


6 posted on 05/02/2012 10:19:40 PM PDT by citizencon
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To: Bellflower; CitizenUSA; Ronaldus Magnus

Thank you so much, all of you. You can always count on Freepers. :)

btw Ronaldus; I sure miss President Reagan but in a way I’m glad he’s not here to see our current president at the helm. He would be very sad at this state of affairs. I seriously think even Clinton is concerned, as much as I couldn`t stand him when he was in office.

Thank you again. Take care, everyone. I’ll stay here another few minutes then I have to get to bed for work tomorrow.


7 posted on 05/02/2012 10:23:14 PM PDT by proud American in Canada
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To: proud American in Canada

Can you get him to listen to www.copingstrategiescd.com? That will help him to become centered so that God can heal him.


8 posted on 05/02/2012 10:24:43 PM PDT by fabian (" And a new day will dawn for those who stand long, and the forests will echo with laughter")
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To: proud American in Canada

http://www.adrenocorticalcarcinoma.org/


9 posted on 05/02/2012 10:26:14 PM PDT by smokingfrog ( sleep with one eye open (<o> ---)
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To: proud American in Canada

Prayers for your nephew and all of you. My heart goes out to you all.

I suggest you contact Children’s Hospital in Denver.

My son was 3 months old when he was diagnosed with a rare blood cancer. At the time the oldest survivor was 6. He’s now 33 and well.


10 posted on 05/02/2012 10:26:24 PM PDT by unkus (Silence Is Consent)
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To: proud American in Canada

Prayers for a miraculous healing for your nephew.


11 posted on 05/02/2012 10:26:31 PM PDT by fieldmarshaldj (If you like lying Socialist dirtbags, you'll love Slick Willard)
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To: proud American in Canada

Another suggestion: St. Jude’s Children’s Hospital:

www.stjude.org

Prayers up.


12 posted on 05/02/2012 10:27:06 PM PDT by fatnotlazy
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To: proud American in Canada

St. Jude’s Research Hospital might be a good place to contact. Praying fir your nephew and his family.


13 posted on 05/02/2012 10:27:16 PM PDT by kalee (The offenses we give, we write in the dust; Those we take, we engrave in marble. J Huett 1658)
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To: proud American in Canada

St. Jude’s Children’s Research Hospital might be a good place to contact. IIRC they are in aTN.
Praying for your nephew and his family.


14 posted on 05/02/2012 10:29:05 PM PDT by kalee (The offenses we give, we write in the dust; Those we take, we engrave in marble. J Huett 1658)
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To: citizencon; notpoliticallycorewrecked

Thank you both! :)

btw, notpoliticallycorewrecked, for some reason your screen names is reminding me of Ezra Levant’s show tonight (on Sun News, known here as ‘Fox News North’, because it`s conservative.) They interviewed some of those losers at “Occupy Toronto”—I guess now that the spring is here they plan more hijinks all over North America. :)

I noticed they were all well-fed, had iPods or cell phones; and not one that the host interviewed (David Menzies, I think is his name, replacing Ezra) either had a job or was looking for a job. LOL! They are wrecked, just making life difficult for everyone else who’s paying their tab.

Thank you both again.


15 posted on 05/02/2012 10:30:16 PM PDT by proud American in Canada
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To: proud American in Canada

What can I say to confort you during this trial?... But I’m joining you and the rest here in prayer. I’m believing for a miraculous healing from above, in Jesus name, amen


16 posted on 05/02/2012 10:31:45 PM PDT by Lily4Jesus ( Jesus is LORD)
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To: kalee

prayers


17 posted on 05/02/2012 10:33:00 PM PDT by katykelly
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To: proud American in Canada

Prayers up. Please get and read The book Knockout by Suzanne somers. http://www.amazon.com/Knockout-Interviews-Doctors-Cancer—And-Prevent/dp/0307587592/ref=sr_1_3?s=books&ie=UTF8&qid=1336023068&sr=1-3

Forget her cheesy character on Three’s Company. The book isn’t about or even very much by her. Each chapter is another doctor who is CURING cancer. The whole thing is an educated critique of mainstream oncology.

The back of the book is filled with MDs and specialists who are working on fighting cancer WITH AN INTACT IMMUNE SYSTEM, keeping the patient healthy, instead of trying to “kill the cancer” and destroying the patient in the process. Contact some of them that would be appropriate.

Definitely get this book and whip through it.


18 posted on 05/02/2012 10:35:05 PM PDT by Yaelle
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To: proud American in Canada

St. Jude, absolutely. They are pediatric cancer miracle workers. I would call them tomorrow!

They work with families of all means, too.


19 posted on 05/02/2012 10:35:48 PM PDT by garandgal
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To: proud American in Canada

Julie, he has a name.

What is it?

(first name)

TLI


20 posted on 05/02/2012 10:37:26 PM PDT by TLI ( ITINERIS IMPENDEO VALHALLA)
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To: proud American in Canada
I Freepmailed this to you, but on second thought, everyone should have access to this info. Any haters are just tediously ignorant.

There’s a combination of herbs called “Essiac” with an extremely long history of - curing - even the worst cancers, at even the last minute (though earlier use is better). It was discovered by a nurse named Rene Caisse (Essiac is Caisse backwards) in her work with the Canadian natives in the early part of last century. They had used it for cancer for centuries.

I have seen this work a number of times to heal cancer within my own family and friends. I can’t say it works every time, but it apparently works most of the time.

The main way it is debunked is by “studying’ it with the wrong combination of herbs, or using herbs that are too old. So source is important, even though anyone can make it. I used:

www.anursesherbaltea.com

It’s run by a registered nurse who has dedicated her practice to making this available in the freshest form. You can either buy the herb package and cook it yourself (easy to do, just don’t use aluminum and store it in dark bottles in the refrigerator). Or, you can buy the bottled tea pre-made.

It helps to avoid an acidic diet while taking it, but Essiac has worked under the worst conditions.

Best wishes and prayers to you and yours.

21 posted on 05/02/2012 10:37:26 PM PDT by Talisker (He who commands, must obey.)
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To: proud American in Canada
Julie, I will be praying for your nephew. My nephew was 14 and developed Leukemia. He was treated at MD Anderson in Houston. He is 10 years out and doing well. Everything is clear.

MD Anderson is on the cutting edge of many cancer treatments. Below is the link for the Adrenal disease treatments at MD Anderson.

Adrenal Disease treatment at MD Anderson

22 posted on 05/02/2012 10:38:02 PM PDT by sand88 (Nothing on this Earth would get me to vote for Mitt.)
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To: proud American in Canada

proud American, you will get many prayers for your nephew and good advice too.

It is a great idea to ask here for any help you need.

I’ve done it for other, far less important things, and I’ve always gotten good help & advice.


23 posted on 05/02/2012 10:40:48 PM PDT by jocon307
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To: citizencon; notpoliticallycorewrecked; fieldmarshaldj; fabian; smokingfrog; unkus; fatnotlazy; ...

Thank you both! :)

btw, notpoliticallycorewrecked, for some reason your screen names is reminding me of Ezra Levant’s show tonight (on Sun News, known here as ‘Fox News North’, because it`s conservative.) They interviewed some of those losers at “Occupy Toronto”—I guess now that the spring is here they plan more hijinks all over North America. :)

I noticed they were all well-fed, had iPods or cell phones; and not one that the host interviewed (David Menzies, I think is his name, replacing Ezra) either had a job or was looking for a job. LOL! They are wrecked, just making life difficult for everyone else who’s paying their tab.

Thank you both again.


24 posted on 05/02/2012 10:42:25 PM PDT by proud American in Canada
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To: TLI

His name is James, James Helmuth; named after his grandfather James Kosmond, who was an awesome trial lawyer in Chicago before he got hill.

thank you for asking.


25 posted on 05/02/2012 10:43:57 PM PDT by proud American in Canada
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To: garandgal; All

Thank you—I will call St. Jude tomorrow. :)

Thank you all so much!


26 posted on 05/02/2012 10:45:46 PM PDT by proud American in Canada
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To: proud American in Canada

You’re welcome


27 posted on 05/02/2012 10:49:10 PM PDT by fabian (" And a new day will dawn for those who stand long, and the forests will echo with laughter")
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To: Talisker

“There’s a combination of herbs called “Essiac” with an extremely long history of - curing - even the worst cancers, at even the last minute (though earlier use is better). It was discovered by a nurse named Rene Caisse (Essiac is Caisse backwards) in her work with the Canadian natives in the early part of last century. They had used it for cancer for centuries.”

_____________________________________________

You’re right! You’re reminding me of a friend I used to have when I first moved to Canada—she had breast cancer and used this Essiac—she was cancer free. I’d forgotten about that! Thank you, Talisker! I’ll send my sister a bottle tomorrow.


28 posted on 05/02/2012 10:49:26 PM PDT by proud American in Canada
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To: proud American in Canada

The Mayo clinic in Rochester,MN is only a three hour drive from Madison,WI. The level of care is best I have ever known. Had my son in the children’s wing of the hospital(St. Mary’s) for several days. Can’t recommend the Mayo organization enough. There is a reason that kings,queens, and world leaders go to Rochester.
Prayers up.


29 posted on 05/02/2012 10:49:26 PM PDT by cornfedcowboy (Trust in God, but empty the clip.)
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To: proud American in Canada

Prayers offered up. Jesus told us that the little ones on earth are always under the care of their guardian angels in heaven. Please try to hold that thought in mind as we pray for your nephew to get well.


30 posted on 05/02/2012 10:49:51 PM PDT by Ciexyz
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To: proud American in Canada
Now, I learned today that the doctors have made three massive mistakes--mistakenly diagnosing him when he was a toddler (and had pubic hair, muscles, and was beating up his older brother).

It's a very rare tumor. But if it was an adrenocortical carcinoma in 2005, it would have been a miracle to make it without treatment to 2012. Even with treatment, he probably wouldn't have made it past 4 years, though there is a paper detailing a group of patients who with recurrent disease had survivals between 12-28 years (Extremely long survival in six patients despite recurrent and metastatic adrenal carcinoma. Eur J Endocrinol. 2008; 158(6):911-9), CONCLUSION: Some patients can have an extremely long survival of ACC, despite recurrent disease and metastases. The mainstay of therapy in our patients was repeated surgery and o,p'-DDD [mitotane (o,p'-DDD) treatment].
31 posted on 05/02/2012 10:49:57 PM PDT by aruanan
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To: proud American in Canada
I am not a doctor, but in my search of alternate therapies for cancer, I would encourage you to look at the studies on grape seed extract. None are on this form of cancer, but it shows strong activity against multiple cancers by inducing apoptosis, and the mechanism it uses is common to many cancers. It is also rated as GRAS in the US (Generally Regarded As Safe).

It apparently takes at least ten days of ingesting the extract to finally pass through the blood-brain barrier.

For the initial colon cancer study, I calculated it would take more than 20 200 mg capsules for the dose that knocked out the most cells.

32 posted on 05/02/2012 10:50:41 PM PDT by ConservativeMind ("Humane" = "Don't pen up pets or eat meat, but allow infanticide, abortion, and euthanasia.")
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To: sand88

MD Anderson is the best cancer treatment in the nation...I would second this recommendation.


33 posted on 05/02/2012 10:53:19 PM PDT by willyd (your credibility deficit is screwing up my bs meter...)
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To: cornfedcowboy

Thank you, cowboy. :)

I had the pleasure of living in Texas for a while when I was younger, and traveling through the Eastern south—there are no nicer people than Southerners. *Sheepishly hopes you’re from the South; if not, I love the West, too! Lived in Colorado for ten years and loved—it broke my heart to move up here. :)


34 posted on 05/02/2012 10:53:50 PM PDT by proud American in Canada
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To: fatnotlazy
I agree that St Jude's in Memphis is the best place for the child. Back in 1967 my third child was diagnosed with Wilms Tumor an adrenocortical sarcoma. They excised her kidney and started a treatment of ‘Actinomycin D’ and a series of radiation treatments. She's alive today. However, once metastases begins I'm sorry to say the odds for survival go down. As the parent of a cancer survivor my prayers go out to you and your family, and especially your nephew.
35 posted on 05/02/2012 10:56:01 PM PDT by Doc91678 (Doc91678)
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To: proud American in Canada

ST. JUDE’S Memphis, Tn. If anthing can be done, they are the best in the world.


36 posted on 05/02/2012 10:57:52 PM PDT by Coldwater Creek (He who dwells in the shelter of the Most High will rest in the shadow of the Almighty Psalm 91:)
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To: proud American in Canada

Hello Julie
So sad about your young nephew.
Sounds like his mom has an ear for some ‘alternative’ remedies.

Not a physician - read a lot.
My thoughts:
*Cancer Treatment Centers Of America - get there!
Have sister call and chat with them. Only 5 or so around the country. Seem to deal with aggresive or impossible cancers.

*Google Dr. RALPH MOSS. He is the ‘Go To’ person for info. For years he has kept up with all cancer therapies, and has reports on their efficacy. He may still offer talking on phone with him - think he charges, but not expensive.
I used to get e-mail reports once a week from him.

*As for supplements, I would be taking ‘MycoPhyto Complex,’ capsules, by Advanced Bionutritionals. Boosts the immune system. Activates Natural Killer (NK) cells. There’s other brands, but this is the one we can speak for, after stopping advancing symptoms of colds or flu - time after time. We also are thinking of possible cancer prevention, by keeping the immune system boosted. . Believe this is our 3rd year using. Our young grandkids open the capsules, and stir into apple juice! The 5 year old will stop and say “I need my Mycho Phyto!” and get it done!

*Another supplement would be ‘Flora Floressence.’ An herbal tea. Drink cold. Whatever the label says regarding amount daily, once there is cancer, Dr. Julian Whitaker of Newport Beach, - largest read newsletter - would have us add one more dose daily. Maybe it’s adding one more ounce, and one more dose. It’s not a drug - cannot hurt!
These products are not cheap, but - - -

To order MycoPhyto: 800-791-3395.
Company is in Atlanta. Product comes fast.
I think many are ordering - believe I may have talked about it before on FR! Sure people know about it from elsewhere.

Flora Floresence may be in discount vitamin stores. Regular health food stores, or go on-line and Google ‘Vita Cost.’ It’s a discount place/catalog - used it for years.

Google ‘Flora’ for products.

That’s plenty of info to take in. Suggest telling your sister to add one thing at a time, for a week or less, so nephew - or anyone! - is not overwhelmed!

*God Bless*
USARightSide


37 posted on 05/02/2012 10:58:47 PM PDT by USARightSide ( SUPPORTING O U R TROOPS)
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To: proud American in Canada

Try to quiet all your emotions and your everyday thoughts, don’t have any particular expectations, and then ask God for what you can do to help your nephew or his family. You will be surprised by the answers you get.

God bless you.


38 posted on 05/02/2012 10:59:39 PM PDT by PGR88
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To: proud American in Canada

Maybe Cancer Treatment Centers of America. St Jude’s.

Glenn Beck had a man named John Kanzius on his radio show last week. I didn’t hear it but my husband told me about it. His story sounded pretty amazing and his organization is called Kanzius Cancer Research Foundation. Website http://www.kanziuscancerresearch.com. I don’t know exactly where they are at this time with the treatment but it would be worth a look.

Lots of prayers for your nephew and all his family.


39 posted on 05/02/2012 10:59:48 PM PDT by abigailsmybaby ("To understan' the livin', you got ta commune wit' da dead." Minerva)
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To: proud American in Canada
How about MD Anderson Children's Cancer Hospital? They have a very good track record. For adults, my sister went to MD Anderson in Texas to have her non-Hodgkins lymphoma staged. One of my cousins was diagnosed with cancer and was told that it was hopeless. He went to MD Anderson for treatment anyway. It's been over five years and he's still going strong.
40 posted on 05/02/2012 10:59:48 PM PDT by aruanan
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To: proud American in Canada

I have not tried this, but there is a product online called carnivora. also on coast to coast AM there is an Italian doctor that claims all cancer comes from fungus and can be cured with baking soda?

something to read about the carnivora is from the venus fly trap plant and is supposed to wake up white cells to destroy diseases.


41 posted on 05/02/2012 11:05:35 PM PDT by television is just wrong
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To: proud American in Canada

God bless and keep you and your family. prayers.


42 posted on 05/02/2012 11:09:49 PM PDT by television is just wrong
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To: Ciexyz; willyd; Coldwater Creek; aruanan; ConservativeMind; All

Okay, I’m beat. I wanted to keep up with everyone’s expressions of support, but I can’t anymore. I hope I didn’t miss anyone. Thank you again. You all are true heroes and FRiends, that is for sure.

I will respond tomorrow. I know that there is a lot of positive energy, thanks to all of you, that is flowing towards James’ way. :) God Bless you all.


43 posted on 05/02/2012 11:15:45 PM PDT by proud American in Canada (nn')
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To: proud American in Canada

Try Dr Thomas Cowan, San Francisco. He knows both AMA and eastern medical methods, and has some well informed ideas about how to get to the cause. God bless!


44 posted on 05/02/2012 11:20:52 PM PDT by blackpacific
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To: proud American in Canada

FYI-you’ve got mail.


45 posted on 05/02/2012 11:26:01 PM PDT by cornfedcowboy (Trust in God, but empty the clip.)
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To: proud American in Canada

A humble Prayer...


46 posted on 05/02/2012 11:26:55 PM PDT by JDoutrider (Impeach! Incarcerate! Deport!)
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To: blackpacific

Thanks blackpacific (I’d love to hear the backstory on that screen name! :) ); I’m imagining some sort of weird deep sea fishing expedition. ? :)

good night.. :)


47 posted on 05/02/2012 11:27:48 PM PDT by proud American in Canada (nn')
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To: proud American in Canada

Mayo Clinic

St Judes Hospital for Children


48 posted on 05/02/2012 11:30:06 PM PDT by blueplum
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To: proud American in Canada

Almighty Father, please heal Julie’s nephew and make him whole, as is Thy will. Please also grant all the family needs. I ask this in the Name of Our Lord and Saviour Jesus Christ, amen.


49 posted on 05/02/2012 11:30:06 PM PDT by Smokin' Joe (How often God must weep at humans' folly. Stand fast. God knows what He is doing)
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To: Smokin' Joe; proud American in Canada

AMEN AND AMEN


50 posted on 05/03/2012 12:18:36 AM PDT by Coldwater Creek (He who dwells in the shelter of the Most High will rest in the shadow of the Almighty Psalm 91:)
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