Thanks Marion, I did refresh and that simply did the trick. So cute!
Dearest Patzel I am truly sorry to hear this. Perhaps he needed time alone or perhaps he didn't want you to have to go through this. Take it from me Kris is the perfect one to talk to if you like. We spent a little time together at a Lake this last summer and she is terrific! I will be thinki8ng of you. Give him some time and if not wish him the best! We all love you as you made a big impact with us. Take care.
Oh, thanks for the reminder, Marion, beautiful card. Think I will ask Santa for a brain this year or go back to Kansas (really Missouri, close enough) and get one. The cards are really pretty!
Thank you Rick. Some things just beg to be repeated and this is one of those wonderful things we look forward to, especially in Phoenix! Nice job, again!
I want to wish DON all the best on his Chemo, Friday and I sincerely hope it 'fits' him well. Actually everyone here will be cheering him on. Thank you so much for keeping us posted, you are not alone!
Lisa thank you that was totally priceless!
My son used to send me "personal" and beautiful letters on my Birthdays and Mothers Day and I was sitting here today going through them when I found the following paragraphs, I hope it gives you something to think about:
"Before Teddy went for his 1st Whipple, I had heard of Cancer and had even known a few people who had it and recovered. Until the understanding of CC I had not known anyone I loved so dearly stricken by this illness. Teddy immediately went in to a mode of steeling his mind. When something like this is coming at you and you may feel it's easier to jump ship. Not Teddy, he walked into the unknown with his head high for his loved ones and that is called Heroism! "Teddy did this not once but twice and almost a 3rd time. Yet he never flinched, his will and strength were powerful."
"We all stood together for him. Many times we see people run from their problems so it is beautiful to see people stand up and fight and now I understand the true meaning of SURVIVOR. The night before the 1st surgery I could feel the prayers and the love in the room. It was like thousands of voices softly asking for God's divine intervention."
Too bad my son cannot meet all of the SURVIVORS on this Board! You are all Heros too. I just thought it was interesting after 4 years to read this perspective from an older Child. Again, BE STRONG
Hi there Not Done Yet, so very good to hear from you. I will post an example for you below. I am trying to get it all in by the end of March. EMail is good.
In Memory of Salvatore D. Sardina In our hearts forever.
Teddy and I met at a Night Club for older Singles (he was 61 and I was 54). He asked me to dance and soon a man I was dating walked in so one dance is all Teddy and I had. His Sister came up to me and said, “My brother thinks you’re so cute, would you dance with my brother again?” I explained that I had started dating someone and thanked her. I dated the other man for 7 months and Teddy dated another woman for about the same length of time. We both broke our relationships and 4 months later re met in August, got engaged Christmas Eve and married in July! He was a short Sicilian and I was a short Jewish gal and it was 16 years of a glorious and amazing honeymoon! My daughter called us the wedding cake toppers! I always describe Teddy as a man’s man and a woman’s gentleman. Sadly, in our 11th year of marriage he was diagnosed with Cholangiocarcinoma (Bile Duct Cancer) a very rare monster of a Cancer. Teddy fought the best fight he could for 5 years having survived an aborted Whipple surgery, a double e coli infection, then the real deal Whipple plus the return of the Cancer twice. After radiation and Cyber Knife there was nothing more that could be done and he passed on December 6, 2010. When I feel down I say to myself, “shame on you, you had for 16 years what most people never have in a lifetime”. That is the little trick but the biggest trick is that I am a Believer in the Beyond and I keep a log of all Teddy’s ‘winks’ and in 3 years I am up to 97 visits. When I read the log I feel so much comfort as it reminds me that Teddy, as he promised, is watching over me. The following winks are some of what I have been gifted and I hope in reading them, you will come to love Teddy as much as I do and will see that believing brings a mountain of comfort.
Teddy’s first attempt at visiting, I was straightening my closet about 11PM and the light bulb went out that
I had replaced about a month before. I went to the kitchen for some water and there are 4 ceiling lights, the one I replaced 2 weeks
prior had gone out. Then one behind it blinked 4 times. Teddy would always wink at me to let me know all is OK.
I went to the closet and the closet light was back on. Leave it to Teddy but with a little practice tonight he nailed his lights!
After Teddy’s beautiful Memorial Service the family came back to the house. There were 28 of us and before we went to dinner I
suggested that we go through Teddy’s closet and take what ever they would like. Dani, one of Teddy’s Granddaughters said,
“Grandma, let’s all wear something of Grandpa’s to dinner.” We all loved her idea. There were 6 of us in the closet when the light went out again. When it came back on everyone picked out an item from ties to T shirts and the party began. See, Teddy loved a good party and I will bet anything that he was watching us and laughing his you know what off!
My Mother passed away one month after Teddy. The day after her funeral I had the family over for lunch and while waiting for their
arrival I was sitting in Teddy’s recliner watching TV. I glanced over at the sofa and saw a strange object. It started to move slowly
on one of the back pillows. I said, “Teddy?” and it started bouncing all over the pillow even darting in and out of the creases where the
pillows connect. I said, “Teddy is that you?” The object then jumped from the couch to the floor and back. It was bronzy gold in color,
Dear Alison, I want to welcome you and your 'gorgeous' family to our family. You have already done some great things like bringing in MSK and John Hopkins so you are ready with a top notch team! It is good to hear that you are adapting to the chemo even if the adaption to the CC may time a little more time but you seem to be very strong and you have an upbeat attitude! Your Blog is wonderful and I really meant what I said about a beautiful family. I am so glad you decided to jump on in as popping can be very tiring! This really is not just a sad news site as we have good news and Miracles happening all the time and we are the best family in the world! Now that you have made yourself at home I know you will be hearing from others and please keep us updated on your progress as we really and truly care!
I am so very sorry, Dakota. I hope he heals quickly from the surgery so you can begin other options. Be strong!
Thank you so very much Amir. I think your English and your writing is excellent. You are a very welcome addition to our family.
Great Luck, Dakota, we are all in the room with you and I pray for God to come through the Surgeon's hands. If you are able, please let us know the out come.
I have some exciting news for our Believers! You can be part of a project that I hope will bring $$ to our Foundation, Memorialize our loved ones who had CC and bring us some great PR.
I was thinking how we could have an ongoing Fundraiser and I came up with the idea of a book of Believing in the Beyond stories written by our own Believers who have lost a loved one to CC.
Each member would make their own introduction no longer than 40 lines. Above the Introduction you can have your loved one’s name like In Memory of Salvatore Sardina. If this works out it is a lovely way to remember those who have passed. If you have family that has had winks from your loved one, you could include those stories as well. Use as many pages as you like for the winks.
For those of you that are battling CC it has come to my attention that some of you have received signs when having to make a decision. Please, by all means we would include your stories!
I am hoping to have a 200 page book and will need your stories as soon as possible and ALL proceeds will go to the CC Foundation.
For all Members:
Very important…we need a title. Example: Love, Loss, Eternal It needs to be serious but a touch catchy. We want people to be drawn to the book. If anyone likes to write we need someone who can write an Introduction for the front of the book.
Please let me know what you think of this and any and all ideas welcome. Let’s get started!
We have 8 so far but I just know there are more of you out there.
Dee, I am reposting it now, watch for it.
Gavin, here is to your Dad and I am sure he has already found some wonderful horses to ride. Perhaps he has gone riding with T.
Today they are with you. Tomorrow they are gone. In the days that follow somehow life goes on. But tears that fell like rain, when souls were torn apart, in time are gently frozen in the corners of the heart. So quickly goes a week, a month will disappear, and then the tears return, its been another year!
Dear Carlos, my suggestion, since I am not a medical person would be to call Mom's Doctor, tell him what is happening and ask him if he thinks he may need to change her medications. Please call him as soon as you can as there is no reason for anyone to suffer in that way. Also tell him about the swelling. Swelling comes with CC and is not pleasant. Please let us know what the ONC says. No one wants to be so confused as it can really be scary. Best of luck.
Dee I LOVE that quote! You mentioned you are keeping tab on her visits? Are you going to be writing them for our book?
Marion, you know how I feel about you so I will not repeat what Percy and Gavin said except to say I want to be like you when I grow up. Hey! How do I do that since I am much older than you? I would have never done so well with Teddy without your help and then mentoring me on this Board. The world is a better place because of our Board touching so many lives. Thank you!
Many thanks, my friend on all counts. Lexy was a Freshman at NAU (Northern AZ U) and she called me and said, Grandma, I am really missing Papa today do you think I should write a poem? She is asking me? I told her of course. She emailed it to me and that part you copied is exactly what got to me. But it is also what he would do. Percy, you would have liked him, Marion got to meet him as he helped us at a convention here for ONC Surgeons. It was about 8 years ago. He would work the aisle where the ONCs had to walk by our table. He would just go up to a DOC and say, "Hello, I am a Whipple survivor". Well, I tell you there was not one Doc who did not stop and want to hear more. Then he would wisk them over to Marion. Great dog and pony act so to speak. He was a real gentleman, just like you and I describe him as a man's man and a ladies gentleman. Ha, some day Percy, I will tell you about the other Teddy.... true Sicilian! But I grabbed him at the right time. Hope you are doing good.
Dear Dee, May I also wish your beautiful Mamma a Happy Birthday. You know that I believe she is watching over you all the time.
Teddy's Niece went to a Medium about 2 weeks ago for her own reasons and Teddy popped up and he told her to tell me that my Mom was with him! I believed it as my Mom absolutely loved him! One day you will be reunited with everyone.
• I wish heaven had a phone so I could hear your voice again.
• I thought of you today, but that is nothing new.
• I thought about you yesterday and days before that too.
• I think of you in silence, I often speak your name.
• All I have are memories and pictures in a frame.
• Your memory is a keepsake, from which I'll never part.
• God has you in his arms...I have you in my heart
Re: New member, new diagnosis, new to all of this. (25 replies, posted in Introductions!)
Dear Kerry, Don has one of the most spectacular attitudes I have ever heard about and that will carry him far. It is so much harder to deal with denial (Mom). And especially hard when the child and the parent have to switch roles. If there are 5 siblings are the others around to help you with some of the leg work? I understand your Dad's comments about everyone being brave. Teddy once told me he never wanted anyone around him crying as he spent time steeling his mind for what was to come and he could not be strong if we were not strong. And for you little grasshopper you have already learned well getting your degree in CC101. I have heard Dr. Crane is a very good ONC but even so it is always good to get a 2nd opinion so you will always feel you have turned over every stone. The ONCs don't mind. I hope you get some good news with this next scan and reproduce the family party again. Please let us know, we truly care.
Oh I bet you will have a blast. I sincerely hope some day you come visit your brother here. then I know I will meet you! I heard another great show is The Beatles LOVE. OMG I think it is by Cirque de Soleil! I heard it is beyond fabulous!
I think this will bring a smile to you all. My Granddaughter wrote this at 17 a few months after Teddy passed.
My papa was old, wrinkly, and short.
His age made him the wise kind of sort.
His stature was perfect for making a fort.
His wrinkles were from smiling so much,
My Papa was kind, gentle to the touch.
Papa told us to soar for the moon.
He’d show us the stars and be back by high noon.
He’d tell us to jump, imagine, run wild and free.
No one was better at this game than he.
Our tummies would hurt from all of the laughing and prancing.
Rumbling tummies, Grandma would cook lunch without glancing.
Papa would steal her hand and around the kitchen start dancing.
They twirled and spun with such smiles on their face,
He’d yell “my two favorite ladies are here” Then he’d ask me to take her place.
When we played too rough or I had a bad day,
My papa would always be there to say,
“Young lady cheer up! You’re too pretty to be gray!”
Then he’d whisk me up in his arms and sing me a tune,
Tomorrow will be better and tomorrow is soon!
When I grew up, he said, I could be anything I wanted,
An Astronaut, Jazz player, or a Princess he taunted.
I said I don’t know, and he said I’ve got time.
It might be hard, but if you love what you do it’ll be worth the climb!
He’d give the best hugs, squeezing just right,
I’d hate goodbyes, I’d put up a fight,
Papa is my hero, my shining blue knight.
He’d give me a wink and a kiss on the cheek,
I miss him times a million and two so-to-speak.
After the day was done they’d walk me out to the lawn,
I’d drive away and wave until they were gone.
I’d be thinking about our adventures until dawn.
Papa always knew exactly how to show love,
That’s the man I think the world of!
Hey, Porter, actually it sounds good to me as he was open to a lot of options. I too liked the way he talked to you. You know, I think a Doctor makes a world of difference in his attitude. So, do you think a visit may be in order around the holidays? Hurry up get that scan done! LOL I am not very patient for a patient!
Deborah, welcome to our wonderful family but so sorry you had to join us. May I ask where Don is being treated and most of all over anything else have you been to someone for a 2nd or 3rd opinion. What is the reason they give for no surgery? Before I accept Palliative care I would definitely get another opinion. Or during palliative care.
If he does not feel like eating have him graze all day instead of bigger meals as they take one look at a full plate of food and it looks so huge to them they rather not even try to tackle it. I made Teddy comfort food. Buttered noodles, chicken, jello, mac and cheese, eggs any which way like a cheese omelet. When Teddy was in Home Hospice they suggested Carnation instant Breakfast as he did not like the others. I would blend it with skim milk and a banana. He loved that and could have it in place of a meal as it has all the nutrients you need. For fatigue he got B12 injections once a month. He should not have pain, bottom line is comfort. Be sure the ONC knows and he may to try another pain pill. We are here for you, you are NOT alone. I am sure others will be along to help....that's what our family does and you have come to the right place. Any questions pop up don't hold back. Please keep us in your loop, we care.