Father and CC
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Dear Tim,
I am so sorry to hear of your fathers passing. Please accept my sincere condolences. I too lost my Dad to this cancer and I know the pain that you are feeling right now. My thoughts are with you and your family right now.
Gavin
Dear Tim I am so sorry to hear about the Passing of your Father. He fought a great battle and was so lucky to have the love and support of his family. It sounds like he was quite a man. Please accept my heartfelt synpathies.
To my dearest family some things I’d like to say
But first of all to let you know that I arrived today,
I’m writing this from Heaven. Here I shall dwell with God above
Here, there’s no more tears of sadness. Here is just eternal love.
Please do not be unhappy because I’m out of sight
Remember that I am with you every morning, noon and night.
That day I had to leave you when my life on earth was through
God picked me up and hugged me and He said “I welcome you,
It’s good to have you back again,
you were missed while you were gone,
As for your dearest family, they’ll be here later on.
I need you here badly, you are part of my plan
There’s so much that we have to do to help our mortal man.”
God gave me a list of things that he wished for me to do
And foremost on the list was to watch and care for you
And when you lie in bed at night, the days chores put to flight
God and I are closest to you . . in the middle of the night.
When you think of my life on earth and all those loving years
Because you are only human, they are bound to bring you tears
But do not be afraid to cry, it does relieve the pain
Remember there would be no flowers, unless there was some rain.
I wish that I could tell you all that God has planned
If I were to tell you, you wouldn’t understand
But one thing is for certain though my life on earth is o’er
I’m closer to you now than I ever was before.
There are many rocky roads ahead of you and many hills to climb
But together we can do it by taking one day at a time.
When you’re walking down the street and you’ve got me on your mind
I’m walking in your footsteps, only half a step behind
And when it’s time for you to go . . from that body to be free
Remember you’re not going . . you’re just coming here to me.Tim
I’m sorry to hear your Dad has passed from this terrible cancer. Please accept my condolences.Gerry
Tim, I’ve been thinking of you and your father constantly since we spoke last Thurs. I am so sad this did not turn out the way you hoped. I am so at a loss for words. Hold the good memories of your Dad close. My thoughts are with you, your mother and family.
Good afternoon,
I realize it has been quite awhile since my last post. The last 4 months for my family have been extraordinarily difficult. While each day during my father’s battle felt like an eternity, it also seems like only yesterday that we received the diagnosis. His diagnosis led me to this website and all of the wonderful people who share their successes and failures regarding this terrible and devastating disease. My father’s battle ended on Saturday at Johns Hopkins University Hospital. He was 70 years old and leaves behind a loving family, a thriving business, and many friends. My father battled to the very end, and unfortunately, his body could not respond to the will of his mind. My father underwent successful liver resection surgery last Tuesday. The surgery lasted in excess of 12 hours, but by the end, the tumor was removed in its entirety. The days after the surgery were painful and in the end heartbreaking. My father was originally scheduled to undergo the surgery at the beginning of May. Unfortunately, blood infections continuously delayed it as each setback required longer doses of IV antibiotics that sapped his energy level to the point that it appeared as though surgery was no longer an option. Each setback was followed by the replacement of the biliary stents, a procedure that itself is not very simple. In the simplest of terms, the resection surgery stirred up the residual infection, and my father’s life became dependent on his liver’s ability to regenerate itself before infection ravaged it and his other organs. For a period of time last Friday, it appeared as though he was heading in the right direction. That being said, I was not surprised when the call came from the hospital at 4:00 AM on Saturday that his condition deteriorated to the point where he would likely become unsupportable at some point on Saturday. By 4:00 PM, the fight was over.
While the loss of my father has been devastating as we were so optimistic that he would beat this, I want to share some of my thoughts on his experience at Hopkins. Because his case ended in death, it is hard to call his experience a success, but I cannot speak more glowingly about the level of care he received. Firstly, Dr. Timothy Pawlik, the man who performed the surgery on my father, is incredible. My father and mother lived at Hopkins for 7 weeks before the surgery and during that time, Dr. Pawlik and my father formed a special bond. In his own words, he loved my father and tearfully explained that he wished he could have done more. Furthermore, his nurse practitioner, Tam, provided daily reassurance to my parents throughout this process, one that had more ups and downs than your favorite roller coaster. Dr. Pawlik is extraordinarily busy, and for him to take such special interest in my father illustrates the quality of people you meet at Hopkins. In the end, Dr. Pawlik did everything he could for my father. Perhaps, proceeding with the surgery in light how sick my father was before it could be questioned, but if my father were told last Monday that the surgery could not be performed, he would have died from heartbreak. The preoperative procedures and the resulting setbacks were hard on my father so hard that he was close to death at least once before surgery. The hope of recovery allowed him to persevere. An extra 3-6 months of life where the quality of that time would continue to diminish was not the way my father wanted his life to end.
In closing, I want to thank all of you who shared information with me that gave my father a fighting chance. I want to extend a special thank you to Jim Wilde, who spoke to my father and me on several occasions. The world needs more people like Jim. Nothing will bring my father back and I expect that I will be thinking of him everyday for the remainder of my life. My sincerest hope is that people will be saved from what was learned from my father’s case. Cancer is nasty and this cancer is especially nasty, and I hope that you do not have to read this because it will likely only be read by those of us touched by it. I also make myself available as a resource to anyone seeking more information for themselves or a loved one.God Bless,
Tim
Tim, you can trust Dr. Kato to give you his honest assessment without any ego involvement. About speaking with your Dad, I feel I owe at least that to anyone I can be helpful, given my own good fortune. You should know and I tried to tell your Dad, that Dr. Kato has operated successfully on many who were deemed ‘inoperable’ by many other doctors. I can’t offer any medical opinion and you need to be realistic, but Dr. Kato is able to things others aren’t. My offer regarding the CD still stands if you want it. Just send me your mailing address by email.
I can relate to the waiting … it certainly caused me some angst about two years ago and even caused my AICD (pacemaker/defibrillator) to fire twice in 24 hours for the first such events in five years. As fate would have it, it hastened my first meeting with Dr. Kato, since a very cooperative doctor in NJ had me transferred to NY Presbyterian ‘for observation’ as an inpatient. I saw Dr. Kato for a pre-surgical consultation the next day. This whole deal is very stressful, especially until you have a clearly defined game plan in place and you’re comfortable with it.
Good luck and try to remain hopeful, hard as it may be. It’ll rub off on your Dad. You or your Dad can call me anytime.
Jim,
I want to thank you for all of the information and speaking to my dad on Friday. I think he is resigned to the fact that it is inoperable, and as such is preparing for to start chemotherapy. I, nevertheless, contacted Dr Kato’s office Friday and sent scans and doc reports to his office today. It is hard waiting patiently when I know that time is the enemy in this battle. My sister also reached out to Johns Hopkins today and I expect to send them a similar package tomorrow. I really cannot thank you enough because as helpless as I feel you have provided inspiration and much needed direction. I pray that Dr Kato is able to review information tomorrow and believes he can help my father.Tim
I would contact Dr. Kato today if your dad were my father. Complete contact info including his secretary are at the end of the ‘hospitals’ link below my name. His secretary, Delia, will be very helpful and make sure she knows you will be traveling from a distant place, so she will know the impact a re-schedule might have on you. I can’t answer your medical questions, but Dr. Kato surely can. You will find him a kind, humble and very caring man, but he’s also a giant in his field. BTW, Dr. Kato has written tons of research papers and is likely the only US surgeon doing what is known as ex-vivo procedures, where the affected organs, cancer masses are removed from the body, and the re-useable parts transplanted back to the patient. Presbyterian is associated with Columbia Uinversity Medical School and surgeons (and many others) are on the teaching faculty besides their surgical duties. In fact, until several years ago, the hospital was known as Columbia Presbyterian for many years. Loads of research is done there in many fields.
I know the feeling of being overwhelmed, but don’t let it keep you from action once you have decided on a course. Good luck and bless you for being the caring son and advocate for your dad.
Let us know how you make out.
Good morning,
I want to thank all of you for reaching out. Dad’s surgical procedure to insert the metal stent was a success according to the surgeon and he will come home today if blood tests show that the liver has begun functioning correctly. The choice for the metal stent was made as a similar procedure was performed last week with a plastic stent and it did not improve liver function whatsoever. I have yet to speak to the oncologist, apparently affiliated with U PENN, but he indicated to my father that it may be inoperable, which might be another rationale for the metal stent. That being said, these docs are not at the forefront of treatment of CC. While they have done well to treat dad and keep him upbeat, I think based upon the responses to my post it is a mistake to deem his situation as inoperable, until we have contacted a surgeon who does resections. My concern today is of course time, and how the standard course of treatment (i.e. metal stent, chemo) may or may not conflict with the more advanced, aggressive forms of treatment. The local oncologist told dad that he could start chemo as early as next Wednesday. I feel we must get a second opinion and being within driving distance to NYC and Baltimore, the resources are available, but I do not want to delay chemotherapy if that will be part of any future treatment program. As far as treatment options, it seems like that depends on the staging, which I suppose the biopsy taken during yesterday’s procedure will help determine. Because removal is the best option, it seems that finding a ‘miracle surgeon’ is step one. The ‘miracle surgeons’ that many of you have kindly shared your experiences about are not necessarily affiliated with the hospitals that have active research programs. So my question is this, is the first step to contact NY Presbyterian and Dr. Kato’s team to determine if it is operable? If he determines that it is not, would a better course for treatment be to go to Johns Hopkins where research is being actively pursued. From hour to hour, I feel both overwhelmed by the availability of information and optimism that there are such resources available for this horrific disease. Thank you again for all of your support and information.Tim
Hi Tim,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear about your dad. I can’t really add to what the others have already said to you but I just wanted to join them all in welcoming you here. I am glad that you have joined us all here as you will get a ton of support from all of us. So please, feel free to ask any questions at all when you have them and I know that the members here will do what they can to help in answering them.
I was my dads carer as well when he was given the diagnosis of CC and I know what you are going through and how you are feeling right now. His CC was deemed as inoperable from the start and that is why he had a metal stent inserted to help the bile to start draining which worked very well for him. He aslo had PDT as his treatment. Like you, I had never heard of CC before this point and it all came as such a shock. Coming here helped me so much in many ways and I am sure that coming here and the great people here will also help you, so I hope that you will keep coming back as we will all be here for you. You are doing the right thing in seeking more information about CC and what options your dad has, and I know that your dad will be so very proud of you. Please let us know how you get on with this and keep us updated on how your dad is doing.
My best wishes to you and your dad,
Gavin
Hello Tim….I would like to follow Lainy, Jim, and Cathy in welcoming you to our site. Tim, do you know why a metal stent had been chosen? Generally, this will lead to exclusion from a resection. I congratulate you on being a fantastic advocate for you Dad and I encourage you to seek out other opinions.
All my best wishes,
MarionTim-Welcome and also so sorry you had to find us. There is hope. I am a CC survivor. I am alive because of a transplant. I also had one of the nations top doctors, Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. I have an amazing story to share so please feel free to call 618-567-3247 or email
jrdunnagan@gmail.com You can also read my story at thetelegraph.com under christmas miracle.
You need to act quickly as Jim said because time is your enemy. I suggest you google Dr. Chapman and Dr. kato. Barnes and the Mayo both have the same clinical trial for CC. Resection and transplant are your best hope for cures. Make sure you ask your doctor about both and don’t rule them out till someone who does transplants and resections say they are not option. This a rare cancer and so misdiagnosed and treated.
Lots of prayers-CathyTim, welcome to our wonderful family but sorry you had to join us. I am glad to hear you have been reading up on CC as knowledge is powerful. I assume you have an appointment with the Oncologist to talk about prognosis and treatment?
We try to live by 2 rule, #1 try to stay realistically optimistic #2 More opinions are definitely OK if your gut is not completely satisfied. I promise you that once a game plan is in place you will feel better and the fight begins. The protocol seems to come from the Oncologist. He will tell you what he suggests and if you are not happy with that or want to seek another opinion, then you can gather all the test results and begin the journey. I am sure you will be hearing from more members and some from your area. Please keep us posted, we care.Tim, if it were me, I would contact Dr. Kato at NY Presbyterian. There’s no one his equal in Phil from what I know. Complete contact info is under the ‘hospitals’ link under my signature.
I’ve gotta run … a cardio appointment with my NY Presbyterian ‘pathfinder’, Dr. Sun Hi Lee, another precious one.
Every dad needs an advocate like you. This may be a tough ride, so hang on. God bless you.
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