Topic: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi, Helen,
Thanks to be a good Christian example for my 4 kids. Even though you could not speak,the  2 tiny drops of tears from your left eye after my daughter's prayer at your hospital beside shown that you were with us during the prayer, and I knew  you truly felt and heard that your good effort to teach my kids to know God  for the past 20 years was not in vain.As I saw the stream of Church members who came to visit you, I realized they were also came to say the final goodbye for the same reason as you had taught their kids to become good Christians too.

Thanks for letting me into your life as one of your  brother-in-Law;thanks for  trusting in me as the medical person that have the privilege to serve you and thanks for letting my wife and kids to have opportunities to share their  individual, personal and final thoughts and prayers with you before your departed.

No words from me can  express the  deep sorrow and understanding  I felt about your CCA journey except I know you just went before me  earlier on the same journey.

May your soul now at peace and join your parents to sit on the right side of God and enjoy heavenly peace.

God bless.

HX:  58 yrs. young  female, mother of two sons;love to cook and eat ;felt ill at Thansgiving dinner on Nov. 2010 ;dark brown urine;later jaundice.

Diagnosed  on Jan.2011 as Stage IV extrahepetic cholangiocarcinoma with mets to omentum.

Start treatment at OSU by Dr. SAAB with Gemzar+Xeloda+Avastin with good results especially on the abdominal omentum carcinomatosis which almost completely disappear after the first CAT scan; Unfortunately  the regimen had to change due to the side effect of "colon perfolation" of Avastin.

MK2206 clinical trial was suggested after several months of Gemzar and Xeloda regimen which did not help that much on the cholangiocarcinoma and ovarian and liver mets  started to develop.Stents had to put in every 2 months to relieve the bile blockage. I suggested to her at this point to try the standard regimen of Gemzar+Cisplatin first before the MK2206 since it is so new(phase 1 clinical trial and only 3 patients in the study)and the GEM/CIS may help to control other mets  like ovarian cancer.
She did talk to the doctorfor further advice,but he said to her"you can always come back for the other chemo"; Well , then she decided not to miss this chance and started the clinical trial on MK2206 ( cell pathway targeted therapy agent); CA19-9 improved substantially  but hyperglycemia(side effect of MK2206)developed and therefore MK2206 had to be stopped after 2 month.
I did at this point ask them to get 2nd opinions for radiation and medical oncology from Mayo,but she is too weak and lost the fighting spirit.
By this time , the other metastasis of the liver,ovary and the peritoneal carcinomatosis  continued to grow aggressively without other form of treatment; The last proposed chemotherapy by the doctor was FOLFOX .
But she was to weak to do the whole regimen;she did only the 5FU 48hour pump once and she could not  tolerated it .
She did not havethat much  pain at the last stage of her journey;she developed sepsis,DVT and swelling of both legs and had to be admitted to the hospital 3 weeks ago.She could still talk to people and the doctors in the first part of the hospital stay;to receive 2 stents for the failing kidneys.
Due to the growth of the 2 ovarian cancers pressed against  her intestine.she could not absorbed anything thru nutritional tube feeding;DNR is requested by her and her family;comfort care like oxygen and iv fluids were provided.
Our family is fortunate enough to communicate with  her for the last 5 days;the last word my wife heard from her was "coffee" and my wife got some and use the little sponge to put some warm to touch coffee on her lips.
Three days later;most of her  organs stopped working except her heart and her mind;she finally transferred to the  Kobacker hospice care.(I highly recommended this facility if you are in Ohio.) 
During the hospice stay;her eyes were closed most of the times; her blood pressure continued dropping until it could not be measured even by hand held BP measuring device;the heart rate continued to go higher trying to keep to maintain the blood pressure;the lower parts of the body was cold and the forehead as well.
Finally this morning, she passed away at the age of 58. she endured this horrible ,inhumane,brutal and cruel disease courageously for 15 months.
May she rest in peace.

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Dear Percy,

I am so sorry for your loss. I know it is so hard for you at this time. How lucky she was to have you as her advocate. Take comfort in knowing you helped her all you could. God bless you, your dear sister-in-law, and your entire family. May Helen rest in peace.

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

What a beautiful letter to Helen, Percy. I'm so sorry for your loss.

My best to you and your family.

Julia x

"Time may be a great healer, but it's a lousy beautician."

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy, I am so very sorry about your beloved Helen and please convey my heartfelt sympathy to your family. She was lucky to have you by her side on this awful journey. 

Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy,

How lovely.  No words can express my feelings.  Know that you, Helen and your family are in my thoughts and prayers at this sad and trying time.

Love & Hugs,
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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy;

I am very sorry.   This is so hard to deal with.  Good people and so very young.  Both of you were blessed to have each other; giving so much love.  Please stay strong.

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Dear Percy,

I am so very sorry indeed to hear of the passing of Helen. Please accept my sincerest condolences.  I so wish that at times like these there were words that I could say that would help. Please know that you did everything you could to help Helen through this and I know how much that would have meant to her. My thoughts are with you and your family right now and you know that we are all here for you as well.

Gavin

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy,

I am very sorry to hear the news. My condolences to you and your family.

Please find some comfort in the fact that Helen is not suffering any more. She has gone to a better place without pain.

Hugs,
Eli

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Dear Percy,

I am so sorry to hear about the loss of your dear sister-in -law, Helen.  Please accept my sincere condolences and I will keep you, your family and Helen's in my prayers.   You are such a good person and I know that you must have been a tremendous help to Helen during her journey.  Helen is now at peace and in a much better place.  Rest assured that you will meet again,  PeggyP

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy,

I am sorry to hear of your loss.  What a beautiful tribute you gave her, and what a wonderful Christian legacy she left.

Kathy

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

My dearest Percy,
Please accept my deepest sympathy on the passing of your dear Helen.
Sincerely,
Diane C.

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi, everyone,

Thanks for your  messages to calm our hearts and relax our mines in my family.

I will be fine,just need a couple more days to get back my energy.
I am exhausted both  physically and emotionally.;physically because I was the medical guy to my brother-in-law;emotionally because I am ,as most of you know by now,also have the same disease as my sister-in-law.

But life is too short and I need to be hurry back to reality and try my best to do what I can to minimize the suffering of this disease--cholangiocarcinoma.

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Dearest Percy, I would just like to say that you are a one of a kind man! Blessed with intelligence while at the same time you possess a mountain of  love and caring. You blend them extremely well to give us one dynamic Percy! Feel better and know that we love you!

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy:
I'm so sorry to hear of your loss.  My thoughts and prayers are with you and with your family.
Hugs,
Margaret

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi, Margaret,

Thanks for your thoughts and prayers.
I am sorry for your loss of your husband too.
I was diagnosis 34months ago,and  I know if God wants, He can call me up anytime. i know my effort on this web site to help to relief the suffering of this disease is minimum at best., but hopefully I can be of an EXAMPLE for others to follow, to keep on trying, knowing that the combining effort toward the same goal will eventually make the dream  come true .It may just take longer .
I saw what had happened to my sister-in-law in the final days;I talked to the doctors to gain more  insights about this disease;I watched and learned about the whole process knowing that the last stage of this disease;the event, could be of value for me as well.
I watch so many patients dieing in my career;but please forgive me to say the following.(please remember I am still emotionally insane at this moment and not the one that all of you get used to before.)

For me, Dieing fast(like having  a full stroke) is much better than this inhumane prolonging , emotional rollercoaster ride of this disease.
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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy my friend, you take care of yourself now. No wonder you are exhausted right now with everything that you have been through. So please, take all the time and more to take care of yourself. And you know that we are all here for you too, and like Lainy says as well, know that we love you too!

You take it easy now,

Gavin

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi,Liz2011,

Thanks for your  kind and comforting words.

For me especially,your quote of " some people walk in the rain,others just get wet." Well I think in my situation,I am both of them. but don't feel bad for me,as I said before,if that is what God wants me to do for my retirement years,I don't mind at all.
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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

My sincere condolences on the loss of a wonderful woman, your sister-in-law and, clearly, a great friend too.

I can't imagine what an emotional wrench it must be for you to have this very same disease as your dear sister-in-law.

I have read many of your posts now (including your very kind post to me in my own thread) and I see that you are a very brave and kind person and a true asset to this wonderful discussion board.

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy
Please accept my deepest condolences on Helen's passing.  You are an inspiration to many of us here and you now need to look after yourself at this difficult time.


Take care

Gerry

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi, everyone,
Thanks again for your condolences for my sister-in-law and the concern for my health. I have just been back again from Ohio attending the memorial service .
I am indeed at my low point of energy level at this moment.But I know I can bounce back after a couple days of resting.
Again ,thanks all of you,especially those who  spent time to write me a comforting message. good luck and
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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy....thank you for all you do.  Here you are fighting this disease, say good by to your beloved sister in-law due to this cancer, moderate on this site, put forth scientific information, support others in their search for treatment, answer personal mail directed to you, attend the upcoming ASCO with us, and apply for the research advocacy position. Oh, I almost forgot you are working on a Chinese translation of the CCF brochures.   Writing this is enough to make my head spin. 

Percy, we love you and we need you, as does your family.  Please, allow for some down time.
Hugs,
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

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi, Marion,
thanks for your concern.
for the The Chinese translation,do you need the simpified Chinese character version for the mainland or the Traditional Chinese characters version of Chinese in Taiwan,HongKong and Marcau.
I have a hard time to find a GI doc to proof read . Base on the large population, I translated the CC brochures,(the one with the picture of the liver ) and the four main goals-collaboration,understanding,research and education-the four pillar of the foundation.
If you can find a GI doc to proof read in the simplified Chinese character,I can e mail back my translation in 2-3 weeks. i am still looking for my Chinese doctor friend to help me,but you know when they said yes,you have to wait for the best time to request the help since this is all volunteering work and they are very busy.
thanks again for helping me to apply the research advocacy position.
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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Oh Percy,

I didn't want to hear this news.  What an amazing woman!  The good news is she is at peace and no longer fighting this horrible monster of a disease.  Tomorrow will be three years since I lost my Mom. 

Please take care of yourself and send my love, hugs and condolences to your wonderful family.

Hugs,
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Hi Percy,

I just wanted to echo what Marion said to you. Yes we need you and your family needs you as well. So, you better take care of yourself and take plenty of time for YOU!!

Take care now,

Gavin

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: Final Goodbye to My Sister-In -Law, A Christian Example for my Kids

Percy...please do not worry about the proof- reading of your translation - there are plenty of physicians I can contact. The upcoming ASCO will allow for more opportunities also. I had not thought of the various Chinese versions - though I am convinced that we will figure it out. 
Hugs,
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