Topic: Missing poppop!!

My poppop, Charles J. Heaton, was more then just my grandfather he was like a dad.... He was the only man in my life that was there for me through everything from the day I was born! He would rub my belly to make me take my medicine when my mom couldn't get me to!! He believed in me even when I did't believe in myself! October 2 2010 I will be walking down the aisle without him and the closer it gets the harder it gets... He was supposed to walk me down the aisle and even though deep down I know that he will be there with me I wont be able to dance with him or to hold his hand and he wont bbe there when i have my babies...There is so much that i miss about him...his horrible attitude when things didn't go his way and the way he loved his family even when we were horrible to be around!!! He passed away 3 days after his 65th birthday on Jan 20,2010 and I still cry still want to blame and still take it out on people that dont deserve it... I dont know what to do... I made him promise that he would be there to walk me down the aisle and he fought soooo hard to do that but in the end i had to tell him it was ok to let go... it was the hardest thing i have ever had to do in my life! I remember the last thing he said was " I am sorry I won't be there to see my great granddaughter Adrianna( my little brother's girlfriend was due anyday) and then he grabbed my hand and said" I am sorry baby I wont be there to walk you down the aisle" I was at the hospital just abt everyday from dec 29 2009 to the day he died and everytime I walked in the nurses would say your baby is here!! LOL and before i would leave for the hospital he would call my cell at abt 8am to remind me to bring his Daily Journal... I remember everything and i am so scared that i will forget it all.... I was there when he took his last breath and my family had to pull me away from him i didnt want to leave him alone....I look back and I wish i could have done more.... there is not a day that goes by that i don't think of him and wonder how i am supposed to get through... my dr suggested grief couseling via hospice but i dont know how to go abt it... my poppop was a marine in the vietnam war and that is where the drs say he contracted the disease that took his life, my mommom is now fighting for spousal benefits which were never recieved during treatment... He is not the only vietnam vet that has suffered from this horrid disease his best friend died 8 yrs and a day before him from the sme cancer ruled the same cause... we need to get the word out to our vets who fought in vietnam so they can be tested...

Re: Missing poppop!!

Dear Jseidel, what a wondeful bond of love you and your Poppop had/have. Nothing in the world can take that away. Not only will he have the best seat in the house on your wedding day, I am sure he would be upset if he knew how worried/unhappy you are about that day.
All you have to do is call Hospice and explain the situation and they will guide you in the right direction. We just started with Hospice and they are wonderful.
My husband Teddy served in Korea and we also feel the Korean War Vets were at risk as well. My wish is for you to have a beautiful Wedding Day as you move on in life and please know that your Poppop will be guiding you with every step you take.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Missing poppop!!

Dear Jseidel - your poppop will be there by your side, walking with you down the aisle; he'll have tears of pride & great joy in his eyes as you take your vows.  He'll see his great-granddaughter through the eyes of you & the rest of his loving family, as you all look at her & he'll be as ecstatic with her as my mother is with her great-granddaughter (my niece's little girl) whom we all love, too.

My thoughts are with you in your grief; I know grieving hurts so much, but it's good & it's cleansing.  My very best to you & your family.  Please keep coming back to tell us how you are.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Missing poppop!!

Dear Jseidel,

I agree, that your poppop willl be there with you on your special day.  You will feel him all around you. 

Unfortunately I know too well how you are feeling.  My husband passed away from CC almost 2 years ago in less than 2 months from his first symptoms.  He was 62 and was also a Vietnam Vet and I am also fighting for a service connection.  Tell your mommom not to give up.  We do need to get the word out.

Know that I am thinking of you and hoping for the best for you and your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Missing poppop!!

Thank you all for the support it helps to be able to talk to people that understand...Lainy, if you need any help with the claims let me know i have talked to a wonderful lady named sheila who's husband died 4 yrs to the day before my poppop and has been a huge help to my family and other families...
Julia, yes i agree that he is with Adrianna, my sister in law went 2 weeks late and I swear he was up there playing with her so he had time with her before she came to us... i know that sounds crazy but it is a feeling i have... I have my poppop's wedding band that I wear around my neck and i had her wear it the day they decided to do a csection because she wasnt dialating... so in my heart of hearts i know he had her and was playing with her....
Darla, did you have any issues getting your benefits there are only 6 cases i know that they approved so far my poppop was first diagnosed in 2003 when they did his whipple operation then again in 2006 when they found the tumor came back and up until 6 months before he passed he did everything he was used to hunted fished bated the woods worked on things he had a really good dr and refused to think he was sick lol and i think that was a huge part in how he stayed so active... he didnt tell us in 2003 that it was cancer so we had no idea until 2006 when it came back but even then he didnt tell us... i wish the government would do something like hold some kind of conference on the cancer so more vets new to go get tested earlier rather then later... I talk to people when i am out at a store and i see someone wearing a hat shirt anything military related to let them know abt the cancer and am still thrown back when they have no idea what cholangiocarcinoma is!!! I want and need to get the word out i just dont know how!!! i know telling one person at a time is helping but its not enough for me there are people out there dying....

Re: Missing poppop!!

Dear Jseidel, just to let you know I tried getting the word out to the masses and it is like hitting a brick wall. About 3 years ago I collected 35 letters from our wonderful family, here, and sent them twice to Oprah and to Ellen Degeneres, Fox News to Bill Reilly, The Doctors Show and to Dr. Oz. Oh and Bonnie Hunt as she was an Oncology nurse. All fell on deaf ears or blind eyes as is the case.
Our CC.Org has made February CC Month for 2011 and they want ideas on what we can do. If you come up with any ideas send them in. The problem here is that CC is still an "Orphan Disease" and not much looked at. I read about a month ago that Pancreatic Cancer was the worst followed by CC and that we have now surpassed Pancreatic and have the dubious honor of being #1. What an honor!!  Our CC.Org also has bracelets and Phamplets you can order, see "Store" above.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Missing poppop!!

I am selling the bracelets... Stacie gave me 100 of them to sell and I have been selling them for 2.00 so the foundation gets a bigger profit.. People are buying and starting to question too which is good we all need to get together and start bombarding our government and where ever we can I can't live feeling that I didn't do everything possible and I know u feel the same... Its disgusting that cc is so unheard of and its worse then pancreatic cancer!!! I get nauseous just thinking that we are doing so much and no one big cares u know?

Re: Missing poppop!!

Just be a little more patient, I have a feeling February is going to be great! You are certainly doing your part and we so appreciate it. One of these days when we say CC people are going to say, I see, I see!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Missing poppop!!

Wow Jen,

I'm impressed with your efforts.  Keep up the good work.  We are all trying so hard to promote awaremess of this rare cancer.  I too tell everyone who will listen. 

I am glad you have been in contact with Sheila.  She is a good person and will do all she can to help.  I had planned to email to tell your Mom to contact her.  So far, my claim has been denied, but I am still going to keep trying.  I figure eventually there will be so many vets with CC as they are all getting to the age where it seems to show up, that they will have to admit to a connection, so the more of us making claims the better chance of that happening.  Together we can all make a difference.

Take Care,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Missing poppop!!

Lainy, lol patience isn't one of my strong points but i am trying... and i feel that we all together will make a difference...
Darla, Yeah after i found out about this cancer I have been trying to do everything in my power to get the word out what is their reason for them denying your claim? it's crazy that they want our men to risk their lives but don't want to support them when they are sick because of where they were sent to protect our country or sent to be in a war we didnt belong in... the sad part is my poppop always wore his marine corps hat proudly... he actually had it on when he passed it was a request that we bring it to him in the hospital lol and he wore it the whole time he was there... it has been a struggle to continue the planning of the wedding but i promised him i would and thats the least i can do for him!!! as for the bracelets when i show them to people they ask what they are and i tell them a brief description and how the survival rate is low and that if they buy a breacelt for 2.00 all but .30 goes to the foundation for research and they can go to the website and it will tellyou more abt it... and if i see them again they say thank you i know someone that was in a was overseas and i let them know so slowly but surely we are getting the word out
Jen

Re: Missing poppop!!

Jen,

The VA stated that there was no evidence of a parasitic infection when Jim got out of the service nor in the years following and before the illness was diagnosised.  However, that is the nature of this disease.  Since he had none of the other things that could cause this and the fact that it usually does not show up until 30-40 years later, I really do believe that this was the cause of Jim's CC, however, so far they are sticking to their story and me to mine!  I do think that as more is known about this disease and how it develops, hopefully that will change.  For now I will just keep trying.  I think they are well aware of the situation and just don't want to admit it as there will be so many claims in the coming years.  CC is a silent killer and is often not found until it is too late and our government has kept silent about it.  These vets deserve to atleast be made aware of the possibility and given a chance to fight it.  So Jen, keep getting the word out and so will I.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Missing poppop!!

That's crazy keep trying and don't give up!!! The government is absolutely absurd to think they will get away with not claiming this disease as a killer and brought on to our men from foreign wars... We will keep our heads up and keep getting the word out as best we can smile

Re: Missing poppop!!

So today was my bridal shower and when I walked in after saying hi to everyone I noticed there was a piture of me my poppop, brother and cousins on a table with a vase next to it... they had a picture of the cc foundation tree and instead of a wishing well they asked people to donate in my poppops name... i completely lost it... that meant more to me then the presents... we raised 100.00 and will be sending it in in his name... it goes to show you that people do care, we  just need to continue to fight for the cause!!! just wanted to let everyone know this because it was very important to me!!!

Re: Missing poppop!!

Jseidel1434 wrote:

Julia, yes i agree that he is with Adrianna, my sister in law went 2 weeks late and I swear he was up there playing with her so he had time with her before she came to us... i know that sounds crazy but it is a feeling i have... I have my poppop's wedding band that I wear around my neck and i had her wear it the day they decided to do a csection because she wasnt dialating... so in my heart of hearts i know he had her and was playing with her....

What a lovely image, Jen - it warmed my heart to read it.  What generous friends you have, too.  You are doing so much to get CC out there & I really appreciate it, too.

I hope you are doing well & that you are getting excited about your upcoming wedding.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Missing poppop!!

Wanted to update you on eveything... The wedding was amazing... We are now expecting  our first baby and into my heart of hearts I know it was a christmas present from my poppop... It was a hard christmas without him... And we just remembered 1yr gone and its hard!! But now I have to get my butt in gear and start planning beef and beer for the foundation into honor of my poppop.. If anyone has any suggestions please pass them on

Re: Missing poppop!!

jseidel434, good to see you again and with baby! Congratulations! I'll bet your poppop is HAPPY with that news. The circle of life.

Beef and beer, huh?  Chili, beef brisket, Sloppy Joes, corned beef and cabbage...
Have a wonderful party.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Missing poppop!!

jseidel.....  Congratulations.  Thanks for returning for passing on the wonderful news of your pregnancy.  Your Dad must be smiling.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER