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Author Topic: Special prayer request  (Read 10067 times)

free2be

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Re: Special prayer request
« Reply #15 on: August 28, 2010, 09:13:16 pm »
Little Wylie has had his share of difficulties. I'm not sure if the additional problems he is having now are from the tumors (yes, there are two they've discovered) or from the biopsy/surgery. He's having trouble with one arm, both eyes, some breathing issues because of trouble swallowing and more. He's having a lot of neck pain, apparently they went into his brainstem via the 1st cervical vertebrae. Ouch!

He is a heck of a brave caring young man. He consoled his younger brother the other night. During his own pain, when Wylie's' oxygen alarm went off and scared his brother, he held his brother's hand and assured Seth that he was okay.

Wylie still needs lots of prayers and more posts to his blog would be great.
http://www.wylieswish.blogspot.com/

At the end of posting a "Comment," you can just choose "Name" and put your first name in. You do not have to have a Google ID. It is a little deceiving if you don't scroll down a little further on the post comment page.
Connie
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Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

CHD63

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Re: Special prayer request
« Reply #16 on: August 29, 2010, 05:34:05 pm »
Many thoughts and prayers for Wylie and his family.  Cannot imagine the stress level .....

Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

free2be

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Re: Special prayer request
« Reply #17 on: August 30, 2010, 05:14:20 pm »
Donnalynn,
Thank you. I will ask what he might like. I know some of what he is into, but a lot of it is computer related and games that right now are difficult with his vision issues. I'm sure there's something he'd find cool from Alberta area. News on his blog indicates he was standing a while today and played a board game for a short time. We are still waiting on full pathology report; it was supposed to be in and a meeting with the family today at 3:00 EST.  Missed that by over 4 hours now!

Clarice,
I can't imagine the stress on the family either. I know his Mom is strong, but no one is this strong. Heck, it is terribly stressful on me and I'm just a friend (and not even THAT close a one). I'm sure it hits me harder because of my Mom's deadly brain tumor and my own AN. All this further throws my Addison's for a loop and makes me less resilient. I wish I could do more, but getting prayers and blog comments going seems to be my role right now.

I'll post more when I know more.
Keep praying and posting...
http://www.wylieswish.blogspot.com/

Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Lizard

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Re: Special prayer request
« Reply #18 on: August 31, 2010, 12:21:27 pm »
Connie,
You are a great and supportive friend and thanks so much for keeping us posted.  I'll keep an eye on the blog (can't post to it from work) but I will send him and the family my well wishes.
Thanks again,
Liz
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Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

free2be

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Re: Special prayer request
« Reply #19 on: August 31, 2010, 06:09:23 pm »
Wylie got to go home today. He was only out of ICU 24-36 hours, but he was doing well enough they wanted him to go home and recovery from the surgery/biopsy. We spoke to him briefly. Poor guy can't control his throat muscles so liquid accumulates and his right arm...well...he can move it, but that's about all...no real control. I'm not sure how his eyes are right now. We are still waiting on full biopsy pathology... He'll need to heal for 4 weeks before they do any further treatment during which time his Naturopath will be attempting some natural healing at least to strengthen him for what may have to come in 4 weeks.

Keep praying,
Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

free2be

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Re: Special prayer request
« Reply #20 on: September 04, 2010, 09:37:48 pm »
Update on little Wylie:
We have the pathology, though what the doctor is telling the family is rather confusing. The pathology indicates a fast growing "infiltrating astrocytoma"; it is in the glioma family. They are saying due to the fast growth it is acting like cancer, but they don't know that for sure. From trying to research it, it seems that the infiltrating indicates a Grade II, but the infiltrating part is like a web going into the tissues of his brain stem. In fact, it seems that in doing the biopsy and trying to debulk it a little they removed some normal brain cells! Treatment options are not good, prognosis is not good. I'm trying to help research possible alternative therapies that show signs of working on this type of cancer in a child, but...well, I'm not finding much. They say there are trials that are showing promise or getting them closer, but it'll be another 10 years before new treatments are available. That won't help Wylie without a miracle. He is being a very strong little boy despite this very sudden radical change in his life. He has little control of his right arm, his right leg is not working real well, still having swallowing issues and eye issues.

If anyone knows of alternative somewhat proven treatments please let me know. They have him starting on lots of nutritional dietary items and are looking at more of those. I don't know if there's enough time however.

More prayers are needed.

Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

leapyrtwins

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Re: Special prayer request
« Reply #21 on: September 05, 2010, 01:15:42 pm »
Connie -

am still praying for Wylie and his family.

Someone, I think it might have been Lori, suggested St. Jude's.  Has Wylie's family contacted them?  They are at the forefront of medical issues like this.

Jan
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Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

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free2be

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Re: Special prayer request
« Reply #22 on: September 05, 2010, 01:19:59 pm »
Jan,

We have contacted St. Jude and can send the records etc. to them for a consult free of charge. The family has not decided yet to seek other traditional medical opinions, as they all seem to be bleak. But, I am researching and trying to suggest that they do so at some point...soon. 

Thanks,
Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

Lizard

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Re: Special prayer request
« Reply #23 on: September 07, 2010, 08:42:57 pm »
Soon is the key.....the sooner the better! 
Logged
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

free2be

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Re: Special prayer request
« Reply #24 on: September 16, 2010, 06:46:40 pm »
Just a quick update. Wylie is in good spirits. His symptoms exacerbated last week, he failed his swallowing test as he was aspirating and choking some. He now has a feeding tube, actually a larger one was put in this week because he wasn't getting enough through the tiny one they put in last week. His right arm is not really working, he's unstable on his legs, but determined to get around on his own as much as possible. He's got significant eye problems, but seems to be able to do some reading still. He is a brave determined little boy. They had to start photon radiation this week in order to try to slow down this [explative] tumor. This will be 5 days a week for 6 weeks (90 miles away!). He is on some alternative treatments in hopes it will further arrest the tumor: Boswellic Acid, Protoletic Enzymes, B vitamins, and I'm not sure what else. The radiation alone does not have a good long-term track record with this type of tumor. What else can I say except he is positive, told his mom he "has a good feeling." Please continue prayers for this special little boy.

Donations for the family can be done through his blog, as well as posts to him.
http://www.wylieswish.blogspot.com/

Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

free2be

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Re: Special prayer request UPdate on little Wylie
« Reply #25 on: October 13, 2010, 08:12:00 pm »
I do have news about Wylie. He is doing much better than expected.

He had a very bad day last week with pain and shooting nerve pain and problems with his other side. He was discouraged and it was difficult for everyone, but he was better the next day. He is now doing much better. He has some grip in his bad hand, is trying to go to school at least part days, he has gained weight back after they took out the feeding tube as he's eating on his own, AND today they got the results of the MRI done last week. To the doctor's confusion and bewilderment, the tumor has not only NOT grown, it is not swelling (which it normally would from the intense radiation he is having), and it "may have even shrunk a little." They were shocked he was doing so well; said he should be having more issues because of this fast growing aggressive tumor and swelling from the radiation, etc. etc. They didn't know why he was doing so well!

So, thanks be to God, prayer, and I'll add Boswellia and other natural components that he has been on (some of which I am also taking, now post-radiation myself). I think there is something to be said for the anti inflammatory properties of the Boswellia and other things I'm taking (Omegas, etc.). I hope they continue to work for both of us, but I am SO happy and cautiously optimistic about Wylie's surprising progress.

Connie
Logged
Diagnosed Nov. 2008 Right AN 7 mm x 9 mm
Incremental MRIs enhancing mass
June 2010 1.4 cm x 0.9 cm extension into the CP angle
Pre-CK Stanford measurements 1.6 X 1.1 cm
9/29/10 - 10/1/10 CK completed with Dr Steven Chang and Soltys, Stanford.
6-month thru three year (8/13) follow ups MRI: stable

questions?586

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Re: Special prayer request
« Reply #26 on: October 13, 2010, 08:20:18 pm »
I love the bewilderment of doing well through prayer.  Thanks for keeping us updated and I pray he continues to do well!
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AN 1.4 cm x 1.7 cm x 1.0 cm
fair amount of hearing loss right ear
diagnosed 7/29/10

I'm a fun and reasonable RN, now living far from appropriate medical care. Feeling overwhelmed!

moe

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Re: Special prayer request
« Reply #27 on: October 13, 2010, 09:03:13 pm »
Such happy news for Wylie!
I just love it when doctors are mystified when patients are doing better than they should be. The POP (power of prayer) and also the other supplements are working!
Maureen
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11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
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11/10/10 BAHA 2/23/11 brow lift/canthoplasty

CHD63

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Re: Special prayer request
« Reply #28 on: October 14, 2010, 08:32:21 am »
That is wonderful news about Wylie!  Further proof prayer does work!

My sister-in-law died 23 years ago from brain cancer.  Her husband is a medical doctor.  At the time, he (curiously) told us that aggressive cancers usually respond the best to treatment.

Whatever the reason for Wylie's improvement, we rejoice with Wylie, you, and the family!

Prayers continue.  Clarice
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Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: Special prayer request
« Reply #29 on: October 14, 2010, 02:25:51 pm »
Connie ~

Thanks for that heartening update on young Wylie!  We're all free to choose our individual reasons for the boy's recovery but, like others, I believe in the power of prayer and will continue to offer mine for Wylie as well as prayers of thanks for his comeback.

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.
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