Topic: Frequent visitor, first post

I have been a frequent visitor over the past 11 months. My husband, Ed (sandtdad), was diagnosed with cc in June 2011. Over that time he has had a number of posts and side communications with some of you. He had good success with the drug trial he was on, receiving 18 treatments of gem/ox plus pamitumamab. When the effectiveness of this was done he was ready to move to the radioembolization. He had a good mapping and the radioembolization was done on April 3.  He was doing fine the first week with side effects that were as expected. A week and a half after the procedure we walked 2 miles to a local restaurant, had a bite, then walked back home. He seemed to be doing great. Two days after that walk, he was being admitted as his liver functions were tanking and he could not keep any food down. After two weeks in the hospital he came home to be with his family with the help of hospice. He passed away on May 7th, he had only been home for five days.
He was young-46 yrs, happy, loving, handsome and physically fit. We had been together 28 years, married for over 21, with 14 yr old twin boys who meant the world to him. 
The day after he passed a doctor from Memorial Sloane Kettering whose team repeatedly over the 11 months reviewed his records to give Ed another opinion, said at the beginning, they did not expect him to survive three months (even on the trial). The fact that he got 11 is a testament to how hard he fought. The support, hope and information this website gave him helped carry us through this difficult time. Thank you all.
My prayers are with all of you who continue to battle this disease.

Re: Frequent visitor, first post

Dearest SandT mom and family, I don't know you yet I feel the bond. I am so very truly sorry to read this about Ed. Yes, he was a valiant, brave and courageous warrior. Much much too young. In time the bad memories will fade and the good memories will take over, I know. And you will find the strength to carry forward with the help of your twins.

If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.                                 By Mary Harris


Re: Frequent visitor, first post

Hi,SandT mom,

I am truly truly sorry for you and the passing of sandtdad.

He and I had communicated several times over his treatment plans of GEMCIS+Panitumamab and subsequently gave his permission to release his medical info for other patients to compare result unselfishly.
He also found and seeked info on radioembolization and discussed the pros and cons of the procedure. I am SHOCK to learn about his passing. I sent him an email about a week ago and just to say hi. with no return mail. Wow, this disease is really unpredictable;I thought he will be the one to tell me all about the success of the radioembo. procedure and let everybody know that his courage to fight can be an example for us to follow. He once said," I just want to fight because I like to have more time to be with my 2 kids who mean a lot to me."
Good night my friend, it is time for rest,thanks for helping out others on this board for their problems;thanks for the courage you display for all of us on this board;and thanks for the knowledge you seek to enrich all of us who seek the same; above all you are a good dad,a good husband and a part of us.
May the Love of Jesus,The Grace of God,and the Fellowship of the Holy Spirit be with you and your family. God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Frequent visitor, first post

Dear SandT mom,

I am shocked and saddened to hear of Ed's passing.  I spoke with him a few times about radioembolization, and he even asked about sending his scans to U of M to have Lauren's surgeon check them out. Although I never met your dear husband, I could tell he was a very caring, gentle man. I feel like I have lost a family member and am very heartbroken. May your sweet Ed rest in peace and I send my deepest condolences to you and your family.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Frequent visitor, first post

Dear SandT mom,

I am so very sorry indeed to hear of the passing of your beloved Ed. I wish there were things that I could say at times like this that would help. But please know that we are here for you if you need us and will help as best we can. Ed was indeed such a tough fighter and my thoughts are with you and your family right now.



Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Frequent visitor, first post

Dear SandT mom-
I am so very very sorry for your loss and the terrible loss for your two boys. You are widowed too young. I have posted this book title many times, CS Lewis A Grief Observed which provided some comfort to me after my dear husband passed away aged 42, (I am 32).
Keep in touch- many of us here know the heavy burden of grief and we are always listening.

Chrissy M

Re: Frequent visitor, first post

Dear SandT,

I too am sorry to hear of Ed's passing.  My thoughts and prayers are with you and your boys at this sad and trying time.   Try to remember all the wonderful years you had.   Those memories will keep him close to your heart.  Take some comfort in knowing that he is now at peace.  No longer in pain or suffering.  You and your family have my deepest sympathy.

Love & Hugs,

"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: Frequent visitor, first post

Dear SandT mom,

I am so sorry to hear that Ed has passed away. I followed his posts very closely, ever since he introduced himself on this site. He had an amazing fighting attitude, always calm and even-keeled.

My heart goes out to you and your boys. Wishing you peace and strength as you face the difficult times ahead.