May 31, 2017 at 4:36 am #95064smarlow68Member
Thank you everyone for your words of comfort…very touching. I am so happy she was able to inspire others here on this site and that she met Marion…I remember her talking about it, but I didn’t know your name. Julie…you have had quite a journey as well and I am keeping you in my thoughts and sending big, tight hugs to everyone.
My mom suffered tremendous pain for quite some time and it lasted till the end so I do take comfort in knowing she is at peace.
Thank you again, sending love.
SandraMay 27, 2017 at 1:58 am #95063darlaParticipant
You have my deepest condolences on the loss of your mother. She was an active and important part of this community and will be missed be all. May she rest in peace.
DarlaMay 26, 2017 at 10:04 pm #95062marionsModerator
Dear Barbara’s youngest daughter.. It is with great sadness I learn of your dear Mom’s passing.
Many years ago I had the privilege of meeting both your Dad and your Mom in California. We stayed in intermittent contact and for some time I followed your Dad’s blog.
Your Mom inspired me with her directness and passion in fighting this disease while enjoying life You lost a wonderful Mom and we lost a friend so dear to our hearts.
May she rest and peace and may your heart begin to heal….one day at a time.
Hugs and love,
MarionMay 26, 2017 at 6:39 pm #95061bglassModerator
Thank you for letting us know about your mom, and please accept my prayers and condolences.
I recall reading her posts while searching topics on the board, and her story is one of great courage and spirit, as well as offering hope for other patients.
Regards, MaryMay 26, 2017 at 5:02 pm #95060positivityParticipant
Thank you so much for sharing. There are incredible people on this forum. You are an amazing daughter for being there for her in this journey. I am also a daughter of a mom with CC. I send my deepest prayers and it shows how people can live with this condition for a long time. She gave enough encouragement for being here and that will remain forever.
Thank you!May 26, 2017 at 3:41 pm #95059iowagirlMember
First, let me extend my deepest sympathy to you in the loss of your mother. I know what it is to have a parent die and I understand some of what you are feeling right now.
I almost didn’t read your post as I tend to try to stay away from reading “memorial posts”, because they are just too hard for me to read most of the time…without crying all day. But, something led me to open your post anyway, and I’m so glad I did.
You see, it wasn’t that long ago, that I was looking for info about people having more than one resection and came across your mom’s posts. Her story was remarkable, to say the least, and she gave me hope….and drive to push for the treatment plan I felt was the right one for me.
After a second recurrence (and two previous resections) my oncologist wanted me to do a chemo, but I KNEW that the new 1.5 cm tumor was operaable or could be ablated. I fought back and fought hard to get one of those latter approaches and finally was able to convince the doctors….or at least convince them that I was digging in my heels and refusing to do chemo. The tumor was succesfully ablated last August. But, about two months later, I was diagnosed with myeleodysplastic syndrome (MDS) due to the first chemo I had in 2014. It is basically bone marrow failure …a type of blood marrow cancer, often called pre leukemia. All my blood counts plummeted. Had I started the chemo when they wanted me to in August, my counts would have dropped , but the true cause would have been obscured andc caused even more damage to my bone marrow with the chemo sending me immediately in the full blown leukemia stage of MDS. I am not eligible for a bone marrow transplant due to the underlying (though NED) bile duct cancer, but I was able to try treatment with the only drug available for MDS at this stage and despite only having a 15% chance of remission, I did get remission after 2 and a half months of treatment, confirmed at 4 months of treatment.
So today, I will send special prayers for your mother…and for you in your loss…..and give thanks for your mom’ freely sharing her story on these boards. Right now, my. MDS is a teerminal diagnosis, but like your mom, I’m pushing for every last day and minute and hope that new treatments become available. For now, I am in complete remission from the MDS and I received clean scans in April for the CC. I owe that, in part, to your mom for freely sharing her story here.
Julie Tupker.May 26, 2017 at 2:40 pm #13394smarlow68Member
My mom is Barbara Hartley and she spend many years on this board and gained many friends. She survived 14 years and 3 months with Cholangio. Some of you may remember her, but she out lived all the friends she made here so perhaps they have met in the after life.
My mom was a fighter and she wasn’t going to let this cancer take her even though the doctor gave her 4 months to live back in Feb 2003 when he resected an 8″ tumor in her liver. My mother fought to her very last breath as she did not want to die. The end was not as peaceful as we would have liked, but we believe she was pain free and she suffered horrific pain for so many years as it was only when hospice came into our lives that my mother was able to sleep without pain. My mother would have wanted everyone here to know her journey here on Earth has come to an end and she will no longer be able to support and encourage all of you.
Thank you everyone who took the time to answer her posts and to reach out with words of comfort over the years. Even with her own demise, she spend countless days researching so she could help and give hope to the family and victims of this nastly disease.
I love you mom! I know where ever you are, you are dancing and having a wonderful time.
Your youngest daughter
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