Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Disney Trip Planning Forums > Disney Trip Reports > Completed Trip Reports
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





 
 
Thread Tools Rate Thread
Old 11-13-2012, 04:11 AM   #796
natebenma
DIS Veteran
 
natebenma's Avatar
 
Join Date: Jul 2008
Location: near Boston
Posts: 10,514

Cynthia- my heart goes out to you and your loved ones who dealing with such scary, difficult issues. Adding my prayers to everyone elses.

natebenma is online now  
Old 11-13-2012, 04:24 AM   #797
MeMom
DIS Veteran
 
Join Date: Jan 2007
Location: Tennessee
Posts: 14,905

Quote:
Originally Posted by eandesmom View Post
Thanks for listening guys. Sometimes just talking, helps. We are getting ready to host Thanksgiving next week and it looks to be a full house after all which does my heart good in the midst of all of this.

I have many on my prayer list right now, too - so many going through losses and illnesses and stresses of many kinds. We do our best to lift them up emotionally and do what we can to help them with their physical needs - the rest of what they need will be provided by a higher power than us. Your family and friends will be in my thoughts and prayers as they go through the days ahead, especially trying to go through the holidays with fortitude and trying to provide some happiness for the kids involved. My dad was in the hospital dying all through December, and I remember it feeling so surreal. I was just numb to anything, but we still 'had Christmas' as best we could for Jill. Trent was a baby, so it didn't make any difference for him, but Jill was old enough to know it was supposed to be a special time.

When I read about the heartache that so many you know are going through, it just reiterates to me that this heavy, burdensome world is a just a place we are passing through on our way to a glorious trouble-free mansion above. There is a song that says 'Won't it be wonderful there?', and to that I say, "Oh yes, it will!!!"

Thank you for letting us share your burdens. I hope it did you some good to 'talk' to us.
__________________
So Much to Celebrate http://www.disboards.com/showthread.php?t=3066162
I Don't Know, I Don't Speak Wind http://www.disboards.com/showthread.php?t=2962147
All I want for Christmas http://www.disboards.com/showthread.php?t=2860915
Mingos in da Watah! http://www.disboards.com/showthread.php?t=2758143
Geen Yight: She's Out of Sight! http://www.disboards.com/showthread.php?t=2677011
My Name is NOT Broccoli www.disboards.com/showthread.php?t=2611094
From Pop to the Top www.disboards.com/showthread.php?t=2495977
Mother, May I? Yes, You May www.disboards.com/showthread.php?t=2448482
Ringing in 2010 www.disboards.com/showthread.php?t=2356794
Brooklynn Takes Bella to Meet Cinderella www.disboards.com/showthread.php?t=2209387
A Two Short, Too Different Spring Break Trip www.disboards.com/showthread.php?t=2122295
Over the river and through the FUN! http://www.disboards.com/showthread....1#post29060069
A Ten Day Ride on a Magic Camel www.disboards.com/showthread.php?t=1869591
Baby and the Tramp...and a Pop Half Century www.disboards.com/showthread.php?t=1470678


We've stayed at Pop Century, All Star Sports, All Star Movies, All Star Music, French Quarter, Wilderness Lodge, Animal Kingdom Lodge, Art of Animation, Beach Club, Vero Beach, Kidani Village and Saratoga Springs - many trips, and many wonderful, magical memories made.
MeMom is offline  
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 11-13-2012, 07:23 AM   #798
PracPerfPatricia
DIS Veteran
 
PracPerfPatricia's Avatar
 
Join Date: Apr 2006
Posts: 2,458

Oh wow Cynthia...,

I just read your post and I couldn't even process all of that through a reading... I'll have to reread it and probably reread it again before I can process it... I can't imagine what it is to live all of that...

I am sending all kinds of positive thoughts and prayers your way...

I hope everyone involved in all of those situations find comfort and have good outcomes...

and I hope that you have the energy and strength to be there for them as much as you can...
PracPerfPatricia is offline  
Old 11-13-2012, 08:32 AM   #799
DWGal210
DIS Veteran
 
DWGal210's Avatar
 
Join Date: Jan 2008
Posts: 4,815

My prayers are with you Cynthia. Lots of hugs & prayers to you!
__________________


DWGal210 is online now  
Old 11-13-2012, 09:08 AM   #800
KatMark
DIS Veteran
 
KatMark's Avatar
 
Join Date: Aug 2007
Location: Carol Stream, IL
Posts: 38,122

Cynthia, please know that I will keep all of the above in my heart and my prayers.

As I learned with Mark's mom and my own mom, and my own breast cancer five years ago, as difficult as it may be with worrying about everyone, taking care of everyone, you must also take care of yourself.

You have been a wonderful friend to me while we were going through all of our turmoils; please know that I am here for you always.
KatMark is offline  
Old 11-13-2012, 10:11 AM   #801
MEK
DIS Veteran
 
MEK's Avatar
 
Join Date: May 2005
Location: Middletown, DE
Posts: 17,330

Cancer Sucks - is all I can say. I have such admiration and respect for the people who fight this battle every day. It can be truly heart breaking for friends and family. I always am inspired by the grace and dignity of cancer sufferers. Two cancer sufferers in one family seems grossly unfair.

As far as your nephew - you know that posts like that just leave me with more questions and I understand your need not to press your sister with more questions. Cardiomyopathy really is a generic "catch all" phrase for a decline in heart muscle function. The question is why? You mentioned a congential heart defect and the first two things that come to mind are atrial septal defect and ventricular septal defect. These are abnormal openings in the septum or dividing wall of the right and left heart. Atrial is a hole up top and ventricular is a whole at the bottom. They can vary in actual location and severity. It also possible for the heart valves to be involved in congential heart defects.

If your nephew has been monitored for 11 - 12 years of his life then I suspect he may have a heart defect that may be amendable to surgical treatment. The decline is heart muscle function may be the indicator that its time to do the repair. Medication certainly can improve heart muscle function. I just hate that your sister has to delay necessary evaluation and treatment of her son. That's not fair. I suspect they may want to do a cardiac catherization or transesophageal echocardiogram to further evaluate his heart muscle function. Tell her to take a deep breath and take one step at a time. She will get the answers she needs.

Idiopathic cardiomyopathy is a term for a decline in heart muscle function where the cause is unknown. This can occur after a viral illness or for no apparent reason. I'm less inclined to think this because he would already be on medicine. This is not something you "just watch" for 11 years. These are the individuals who end up on a transplant list.

There are other types are cardiomyopathy, such as restrictive, where the heart does not relax and fill normally. Not normally a kid disease. Lastly, there is hypertrophic cardiomyopathy where the septum (the center) of the heart is enlarged and creates an obstruction to the heart emptying. This is a cause of sudden cardiac death and is always treated with medication and possibly a defibrillator. This can be diagnosed at any age and may run in families. Again- I would think he would already be on medication.

Now that you have had your cardiology lesson I will put my bill in the mail.

Seriously, it is too soon to jump to any bad conclusions with your nephew. I will be very interested in seeing how his evaluation plays out.

I am truly sorry that you have been bombarded with so many health issues all at once. I will be praying for positive outcomes for everyone concerned.
__________________

The Empty Nester's Magical Mystery Tour I Told You Driving Was Bad for Your Health

Sorry Gaston, They are MUCH More Interesting than You!
Will You Chill Out if I Sprinkle You With Pixie Dust?

Remembering 9/11:MEK Original
Why Not Just Queue Up Another Disney Trip?
How Do You Think We Stay So Happy?
Inching My Way Closer to the Castle Sept 10 TR
Wheeling & Dealing at the WL May '10 TR
Play'in It at Pop Sept 09 Anniversary Trip
JUNE 09 TR...KICK'N IT AT KIDANI DH & I do Disney Solo! DEC 2008 June 2008 tripreport
My Trips 2002-Offsite 2003-POR 2004-Royal Pacific/Daytona Bch 2005-CBR 2006-Pop, SSR 2007-ASM 2008-Pop, Vero Bch/SSR, POFQ/SSR 2009-Kidani/CSR, Pop 2010- VWL, BLT 2011-POR/BCV, Disney's HHI Resort, OKW2012-Treehouse villa/BWV, VWL/BWV 2013-HHI, Secret off site location;BWV/AKL
MEK is offline  
Old 11-13-2012, 10:18 AM   #802
Chilly
I was having a bit of a blonde moment
D'oh!
Married my prince at WDW
 
Chilly's Avatar
 
Join Date: Apr 2006
Location: Essex, England
Posts: 13,325

Love and hugs xx
Chilly is offline  
Old 11-13-2012, 10:21 AM   #803
mickeystoontown
DIS Veteran
 
mickeystoontown's Avatar
 
Join Date: Oct 2006
Location: Bayou Country, La.
Posts: 24,153

I am so very very sorry to hear of the struggles your family and friends are facing. I'll definitely be adding them all to my prayer list. I'm a firm believer in the power of prayer. At least you can take comfort in knowing that they can turn to their faith in these tough times. I, personally, know just how hard it can be to see a loved one suffer the effect of cancer, heart disease and dementia. Praying and praying hard for you all!
__________________
2014 pre-trip report: Doesn't everybody have Disney on speed dial? Seriously? Mickeystoontown does! http://www.disboards.com/showthread.php?t=3258703
2013 trip report: 1 crazy family+2 resorts+5 parks+1 snake+1 surprise= A Mickeystoontown Report: http://www.disboards.com/showthread.php?t=3122381



mickeystoontown is offline  
Old 11-13-2012, 10:23 AM   #804
Captain_Oblivious
DIS Dad #257
Don't underestimate your audience. I'm sure there's a fart joke in here somewhere
 
Captain_Oblivious's Avatar
 
Join Date: Nov 2008
Location: Delaware
Posts: 7,300

My goodness, that's a lot of rain falling all at once. Heavy storm proportions, indeed.

I'm sure you know this, but you and your family/friends suffering through these things are not alone. No one wants to walk through a time of pain and suffering. But when it does come, we don't have to do it alone. You've been through the struggle of cancer before, and maybe there's a reason for it--so you can now walk your friends through the same struggle. You will understand them in a way no one else can.

I will join everyone here in praying for your friends and family. I hope better times are ahead.
Captain_Oblivious is offline  
Old 11-13-2012, 10:48 AM   #805
eandesmom
I'm with Beast
 
eandesmom's Avatar
 
Join Date: Jan 2009
Location: Pacific Northwest
Posts: 12,848

Quote:
Originally Posted by dizneeat View Post
Cynthia, I had NO idea you had all of this going on! Prayers and lots of Pixie dust on the way for you and your family and friends.
Thanks Karin. I don't have all this going on directly, it's so many loved ones around me being hit really hard. In some ways it is easier when it is going on more directly as there is a sense of control. Much as we'd like to carry burdens for others, there is someone greater than us who will and we have to have faith in that. It does put life in perspective and really illustrate how petty annoyances are...just that. I am grateful that we all have each other and I can come here and share.

Quote:
Originally Posted by Flossbolna View Post
Cynthia, I am so sorry that you have so much going on in your life that just is awful. I am thinking of you, your family and friends and hope that the outcome of all those situations will be much more positive than you dare to dream right now!
Thanks Magdalene! I have tremendous hope and faith for all on my list, and those on everyone else's, I think I'm just feeling a bit daunted by the sheer volume all at once. There is good news everyday, we just sometimes have to search a little harder for it.

Quote:
Originally Posted by natebenma View Post
Cynthia- my heart goes out to you and your loved ones who dealing with such scary, difficult issues. Adding my prayers to everyone elses.

Thanks Dee, I know they are heard and it does help.

Quote:
Originally Posted by MeMom View Post
I have many on my prayer list right now, too - so many going through losses and illnesses and stresses of many kinds. We do our best to lift them up emotionally and do what we can to help them with their physical needs - the rest of what they need will be provided by a higher power than us. Your family and friends will be in my thoughts and prayers as they go through the days ahead, especially trying to go through the holidays with fortitude and trying to provide some happiness for the kids involved. My dad was in the hospital dying all through December, and I remember it feeling so surreal. I was just numb to anything, but we still 'had Christmas' as best we could for Jill. Trent was a baby, so it didn't make any difference for him, but Jill was old enough to know it was supposed to be a special time.

When I read about the heartache that so many you know are going through, it just reiterates to me that this heavy, burdensome world is a just a place we are passing through on our way to a glorious trouble-free mansion above. There is a song that says 'Won't it be wonderful there?', and to that I say, "Oh yes, it will!!!"

Thank you for letting us share your burdens. I hope it did you some good to 'talk' to us.
It will be glorious and I do know that he has a plan, I trust in that. Talking is good, my family is a little raw at the moment on so many levels and not up for talking. It helps to have an outlet that isn't just Jeff. I do believe that the holidays are going to be good for all of us though and can lift everyone up together. At least that's my hope.

Quote:
Originally Posted by PracPerfPatricia View Post
Oh wow Cynthia...,

I just read your post and I couldn't even process all of that through a reading... I'll have to reread it and probably reread it again before I can process it... I can't imagine what it is to live all of that...

I am sending all kinds of positive thoughts and prayers your way...

I hope everyone involved in all of those situations find comfort and have good outcomes...

and I hope that you have the energy and strength to be there for them as much as you can...
Thanks Patricia. I'm not living it directly but so many are. What I need to do is really figure out how best I can support my siblings and each are different in that regard...and none good at asking! talking about it here really did help, I feel a little lighter so thank you for listening. My friends that are going through this have huge communities of support and I can chat freely about those situations and be there for folks very openly. The stuff with my family is new, raw and sensitive for my siblings. It will get to a point where talk will be more free but it's not there yet. And I think for me that may be the hardest part, we are a very close knit family who shares everything. When one hurts, we all hurt, and knowing there is deep hurt, fear, anger and frustration, confusion that still has to be processed before the sharing and support can really begin is an exercise in patience on my end. Something I'm not all that good at!

Instead what I can do, and will continue to do, is to forge ahead with the larger trip plans. This all just makes it that much more important and needed. As a distraction for all but also as a much needed time together.
eandesmom is online now  
Old 11-13-2012, 11:12 AM   #806
glennbo123
DIS Veteran
 
glennbo123's Avatar
 
Join Date: May 2008
Location: Pennsylvania
Posts: 8,880

I can't add anything more than others have said, but know that our thoughts and prayers are with you and those whose circumstaces are burdening your heart.
glennbo123 is offline  
Old 11-13-2012, 11:46 AM   #807
eandesmom
I'm with Beast
 
eandesmom's Avatar
 
Join Date: Jan 2009
Location: Pacific Northwest
Posts: 12,848

Quote:
Originally Posted by DWGal210 View Post
My prayers are with you Cynthia. Lots of hugs & prayers to you!
Thank you, it means a ton!

Quote:
Originally Posted by KatMark View Post
Cynthia, please know that I will keep all of the above in my heart and my prayers.
Thank you Kathy

Quote:
Originally Posted by KatMark View Post
As I learned with Mark's mom and my own mom, and my own breast cancer five years ago, as difficult as it may be with worrying about everyone, taking care of everyone, you must also take care of yourself.
I know that lesson well from my biological mom and the boys biological father. In this situation though, not as direct, taking care of myself isn't the issue. Making sure my sister takes care of herself...a much bigger one.

Quote:
Originally Posted by KatMark View Post
You have been a wonderful friend to me while we were going through all of our turmoils; please know that I am here for you always.
Thank you special lady!

Quote:
Originally Posted by MEK View Post
Cancer Sucks - is all I can say. I have such admiration and respect for the people who fight this battle every day. It can be truly heart breaking for friends and family. I always am inspired by the grace and dignity of cancer sufferers. Two cancer sufferers in one family seems grossly unfair.
It is grossly unfair to strike 2 parents at the same time. I do believe he has a much lower grade of GBM than my ex did, which is very good and has a significantly better prognosis. But it can be beat. Though my ex has absolutely thrown away the gift that he's been given which breaks my heart for the boys, his prognosis was 2 years with treatment, 1 year without. That was 15 years ago. There is a couple at my church, close friends of my folks, who went through an almost identical thing, though her breast cancer was caught early and has not come back. What the family and their girls, who are about the same age as my friends kids, went through during it was so incredibly hard. I do believe that faith played a huge part in the fact that we have both of them still with us, healthy now as horses.

Quote:
Originally Posted by MEK View Post
As far as your nephew - you know that posts like that just leave me with more questions and I understand your need not to press your sister with more questions. Cardiomyopathy really is a generic "catch all" phrase for a decline in heart muscle function. The question is why? You mentioned a congential heart defect and the first two things that come to mind are atrial septal defect and ventricular septal defect. These are abnormal openings in the septum or dividing wall of the right and left heart. Atrial is a hole up top and ventricular is a whole at the bottom. They can vary in actual location and severity. It also possible for the heart valves to be involved in congential heart defects.

If your nephew has been monitored for 11 - 12 years of his life then I suspect he may have a heart defect that may be amendable to surgical treatment. The decline is heart muscle function may be the indicator that its time to do the repair. Medication certainly can improve heart muscle function. I just hate that your sister has to delay necessary evaluation and treatment of her son. That's not fair. I suspect they may want to do a cardiac catherization or transesophageal echocardiogram to further evaluate his heart muscle function. Tell her to take a deep breath and take one step at a time. She will get the answers she needs.
Surgery is not being discussed at this time. It was, while he was in utero and it was a very real possibility depending on what they saw when he was born. They were poised to whisk him away to Childrens Hospital at birth, basically with an ambulance on standby. Doesn't mean that it won't be, it's just not on the table right now. I too, have more questions than answers. Pediatric cardiomypoathy is different than adult and as it is relatively rare, however to your point is highly variable, as it how successful medication may or may not be in improving function or stopping the decline. He has had his evaluation and tests, the appointment is for a treatment plan, not more tests at present. That much I do know. Of course if I could remember what the actual heart defect is, it would help but at 12 years ago, I can't recall. He has been through metabolic screening and has been monitored by a nutritionist for years.

The insurance issue really makes me want to go take a frying pan to my ex BIL's head. On a number of levels but this just makes my blood boil. What makes it worse is that he completely favors Kolby as it is, basically ignoring his brother and I think it's just going to become more pronounced and his poor brother (Aspergers) has enough issues with school and puberty as it is!.

I think she needs one of those Magic pillows too.

Quote:
Originally Posted by Chilly View Post
Love and hugs xx
Thanks Claire!

Quote:
Originally Posted by mickeystoontown View Post
I am so very very sorry to hear of the struggles your family and friends are facing. I'll definitely be adding them all to my prayer list. I'm a firm believer in the power of prayer. At least you can take comfort in knowing that they can turn to their faith in these tough times. I, personally, know just how hard it can be to see a loved one suffer the effect of cancer, heart disease and dementia. Praying and praying hard for you all!
Thank you. I am a firm believer and have seen so much healing, I do have faith. But asking for more prayers never hurts. I know how much your family has dealt with, and deals with on an ongoing basis, knowing he is there for us, helps.

Quote:
Originally Posted by Captain_Oblivious View Post
My goodness, that's a lot of rain falling all at once. Heavy storm proportions, indeed.
Yeah. I had a moment this weekend of just wanting some, any, good news. I'm over it and there is good news, we are seeing wonderful progression in post surgery recovery for the friend with brain cancer and another friend, who I didn't even mention, while diagnosed with endometriosis, is celebrating the fact that it was not ovarian cancer and is healing well. And, my uncle who I also didn't mention who has been suffering with complications from adult onset diabetes for years, finally lost the battle on one leg about a week ago. Which sounds awful but he lost his toes on both feet years ago and has been a wheelchair bound crank ever since. With the amputation, he is now being fitted for a prothesis and may be able to walk again. Not only did he survive mersa but regaining mobility could completely change his life...and his outlook. There is good news.

Quote:
Originally Posted by Captain_Oblivious View Post
I'm sure you know this, but you and your family/friends suffering through these things are not alone. No one wants to walk through a time of pain and suffering. But when it does come, we don't have to do it alone. You've been through the struggle of cancer before, and maybe there's a reason for it--so you can now walk your friends through the same struggle. You will understand them in a way no one else can.

I will join everyone here in praying for your friends and family. I hope better times are ahead.
We are not alone and it is a great comfort. If I could give my friends advice on how to best get through it, it would be to not worry about making the rest of us feel better and that it really is ok to focus on just themselves and let others truly help.
eandesmom is online now  
Old 11-13-2012, 11:47 AM   #808
eandesmom
I'm with Beast
 
eandesmom's Avatar
 
Join Date: Jan 2009
Location: Pacific Northwest
Posts: 12,848

Quote:
Originally Posted by glennbo123 View Post
I can't add anything more than others have said, but know that our thoughts and prayers are with you and those whose circumstaces are burdening your heart.
Thanks Glenn. Sharing does help and knowing others are lifting them up makes my heart a little bit lighter.
eandesmom is online now  
Old 11-13-2012, 12:52 PM   #809
rentayenta

There's never enough vacation time
I'm always thinking about it
I can't imagine being in it alone
 
rentayenta's Avatar
 
Join Date: Feb 2007
Location: Utah
Posts: 23,006

Sending lots of prayers and good vibes.

Chloe has been undergoing growth tx for the past 4 years. She's got Insulin-like Growth Factor Deficiency (IGF1- Deficiency) and takes 2 shots of Increlex a day. There's no cure either but the meds have helped her grow. Now that she's menstruating, she's got about 3/4 of a year left on the shots. She's 4'9" and 3/4 so we're hoping she hits 4'11'. www.magicfoundation.org
__________________
me DH DD17 DD15 DS12 Riley Guinness
You bet your aft we had a good time: a Disney Wonder trip report
http://disboards.com/showthread.php?t=3260751
Not too shabby for a consolation prize: a Disneyland pre-trip report
http://disboards.com/showthread.php?t=3200081
rentayenta is offline  
Old 11-13-2012, 03:12 PM   #810
jedijill
Chiefs fan living in Bronco country
 
jedijill's Avatar
 
Join Date: Jan 2005
Location: Denver, CO
Posts: 4,707

Keeping you and your family in thoughts and prayers.

Jill in CO
__________________
jedijill is online now  
 

Tags
animal kingdom villas, disney dream, old key west, vero beach resort



Thread Tools
Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 02:26 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.

You Rated this Thread: