Coffee on the Verandah -The Last Slide, Recap & Souvies 5/29 - Link to Aulani TR 5/31

[MEK]

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.

 

[Chilly]

Love and hugs xx

 

[mickeystoontown]

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!

 

[Captain_Oblivious]

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.

 

[eandesmom]

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.

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.

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.

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.

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.

 

[glennbo123]

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.

 

[eandesmom]

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

Thank you, it means a ton!

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

Thank you Kathy

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.

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!

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.

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.

Love and hugs xx

Thanks Claire!

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.

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.

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]

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.

 

[rentayenta]

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

 

[jedijill]

Keeping you and your family in thoughts and prayers.

Jill in CO

 

[FauntleroyFAN07]

very sorry to hear about this, i hope it helped you some by getting it out and off your chest...it is alot going on, will send prayers your way.

 

[Mndisneygirl]

Oh, that all just stinks! It's a lot to have weighing on your family and you must know that you can always come to us DIS friends for support!
Lots of prayers being sent up for all of them.
I know it works - my friend with the brain tumor had a good surgery on Thursday and was released on Monday! Still a long road, but there are positives!

 

[2xcited2sleep]

Joining in sending prayers and good thoughts.

 

[Poolrat]

Oh Cynthia, How hard for you to deal with all the news from all angles all at once.

I hope "lettin it spill" helped a little. We are all here for you sending good thoughts, love and prayers for everyone.

Cancer is horrible and pediatric heart issues are so scary. I hope the doctors can help everyone and also provide some great bedside comfort.

 

[eandesmom]

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

I bet she will be so excited to be done with it! I'm glad the meds have helped, I know another family dealing with that and it is difficult..and expensive! I am quite sure, based on what I do know, that is it the onset of puberty that has started the presentation of symptoms. I just hope that the meds can manage it and even better, improve it.

Keeping you and your family in thoughts and prayers.

Jill in CO

Thanks Jill!

very sorry to hear about this, i hope it helped you some by getting it out and off your chest...it is alot going on, will send prayers your way.

It does help. I feel bad though, I actually left my poor uncle who just lost half a leg to infection/diabtetes and another friend off the list. I really wish it wasn't so long.

Oh, that all just stinks! It's a lot to have weighing on your family and you must know that you can always come to us DIS friends for support!
Lots of prayers being sent up for all of them.
I know it works - my friend with the brain tumor had a good surgery on Thursday and was released on Monday! Still a long road, but there are positives!

It does work, we are seeing wonderful recovery after the brain surgery and my uncle who just had the amputation may actually have a chance at walking again, which would really change his entire life (and hopefully outlook!)

Thanks Sheree

Joining in sending prayers and good thoughts.

Thanks Christine!

Oh Cynthia, How hard for you to deal with all the news from all angles all at once.

Yeah, I think it was the all angles that got me and then my nephew put me a bit over the edge.

I hope "lettin it spill" helped a little. We are all here for you sending good thoughts, love and prayers for everyone.

it helped quite a bit

Cancer is horrible and pediatric heart issues are so scary. I hope the doctors can help everyone and also provide some great bedside comfort.

I do too. I wish they didn't have to wait until next month to see the pediatric cardiologist. I am not sure why they are switching doctors as he's had a cardiologist his whole life but at some point, I'll get more info.

 

[Angies1274]

I'm so sorry to hear this....sending thoughts and prayers your way.

 

[Native NYer]

Cynthia, I am so sorry you have all of this going on. Saying prayers for you and your family. I hope someone finds a cure for your nephew's heart condition.

 

[eandesmom]

I'm so sorry to hear this....sending thoughts and prayers your way.

thanks Angie!

Cynthia, I am so sorry you have all of this going on. Saying prayers for you and your family. I hope someone finds a cure for your nephew's heart condition.

Thanks Jen, me too!

 

[eandesmom]

Ok, I'm over my pity party. Yeah, that's not exactly what it was but it was a bit selfish and indulgent and I do thank you all for listening.

We did have some exciting soccer news today that eased the pain of the ouster from the state championship earlier than we'd have liked. Kendall was named to our district/league's all star 1st team! So that’s pretty cool to see in the paper. She made honorable mention last year so it's a pretty exciting upgrade. And, while I'm not quite ready to talk about the big WDW/Grand Gathering trip yet...we do have a tentative couples getaway planned for May. Basically we have a situation with some points that have to be used by a date, not really enough to do a family trip, and have to be used before the big trip. I've already done a solo trip and with our schedule in flux as it is, RCI seems too inflexible. Though I have to say, we saw some LOVELY Cabo options that would have worked and were avail...if we could book airfare now. Which we can't. Kendall made it into this years ODP (more soccer stuff blah blah blah) and that was an unbudgeted expense. But we do have to figure something out. Renting is of course an option but it seems wrong not to use them! As I don't want to risk what I need point wise for the big trip we only have so much to play with. Here is what we are thinking. It is not at all for sure and will be airfare and soccer tournament cost dependent but...... we've got 4 days booked and are hoping to make it 6. Where you ask?

Aulani!




The E's will NOT be happy but I plan (if we really do this) to promise them Aulani in 2015. Or sooner if for some reason the big trip falls through. And as far as the May trip goes, the nice thing is we do have the flexibility to push it out if we need to. And they are getting the big trip with their cousins, and just had a huge trip and...they can suck it up. LOL!

The plan is 5 nights on points, with one more as a one time cash purchase once we book flights. That cash purchase one is risky, nights could be gone but we can live with 5 if we have to as the one time points are non refundable.

So the question is, Memorial Day weekend. What would you do?

I have booked Fri, Sat, Sun and Mon already, Ocean View studio. I'd LOVE a 1 bedroom but just don't have the points and really...for 2 of us, the kitchenette will do. I need to add one night on points now, and ideally one later as cash. I have no feel for how fast these dates will book up in this category though I believe there will be a lot more inventory by then which may explain all the availability. Which one should I lock up on points and which hope to pay cash? It will be a bit, probably end of Dec, before we'd do that, maybe even later. Which do you think will go faster, the Thursday or the Tuesday? Should we try for Thurs-Tues or Fri-Weds? Point wise it doesn't matter, all nights are the same. Flight cost is equal on all days right now as well.

With that, back to our regularly schedule programming!

We had just finished a delicious lunch of Mickey Bars and whatever folks could forage out of the fridge, a nice hodge podge of things…and economical too! Somehow lunch took quite a awhile, I did a little bit of work and am guessing the Olympics came on, and we made some beach drinks, because my notes indicated we didn't make our next stop until almost 3!

Yikes. How the day had flown. In fact it had flown so much that when we stopped by the Green Cabin to inquire about rentals...they informed us there wasn't much time left, we could only have them until 5. I joked about a half day rate and they said "well….those ones over there look like they've packed in for the day, why don’t you take them?"

For free.

Score! And with that, and a very quick dump of our stuff we all RAN into the ocean. Aahhh…Boy that feels good!

After cooling off, I played with the panoramic app on my phone

Apparently the bike ride wore Kendall out

Or she and Phillip were discussing Phelps. Again.

That’s better!

Eric decided to try the board

It was very cool watching Eric. Before and after his time with the board he and Evan were racing out near one of the small buoys. I had never seen Eric swim that far and certainly not in the ocean. The lessons had actually paid off!

Evan, having learned his sunscreen lesson, had put on a swim shirt. Oh wait, I made him.

Apparently he’s running away from the GIANT wave

Made it!

I enjoyed the view

While Eric decided to try again

Or not

Apparently they both were more interested in the sand.

Evan's turn to be buried

Jeff and Kendall went for a walk

You can rent these

Eric wasn't making much progress

The beach cottages. I would LOVE to stay in one of these someday

Continued in next post

 

[eandesmom]

Continued from previous post
A view down the beach

I decided to go for a walk too! A solo walk, in the opposite direction. What a totally bizarre concept. It was LOVELY!

I got a kick out of the graffiti wall

And enjoyed viewing the resort

Looking back

Love notes in the sand

Some nice real estate

Little less crowded as I walk north huh?

As I headed back, I could see that Eric was still digging

And right about then Evan got hot, fed up and ran back to the ocean

His turn for the board

Not much wave to catch

Better than nothing I guess

Kendall & Jeff arrived back and the kids decided a repeat of the day before was in order. “Let’s bury Eric!”

Except this time, it took a bit of an art form

I never get tired of looking at this

Eric however, was starting to get tired. But was having trouble getting up

Whew! Time to get that sand off

And water play for all

Me? I was breaking in my new drinkware. Nope, not a coffee cup

A Tervis!

Ok that thing was AMAZING at keeping my beach drink cold! Loved it loved it loved it! Fabulous purchase. I'm too scared to put it in the dishwasher but they say you can.

Continued in next post