Re: new to site, looking for support

After 5 doctors told my mom that she was inoperable we found Dr. Chapman in St. Louis. Please all of you reading this...SEND THEM YOUR INFO!! They are amazing at getting back to you...,you pay nothing to have them look at your records. It is worth a try he has worked miracles for my mom and look up (Jathy) her story is what inspired me to bring my mom there. She has been in St. Louis for a month where she had her liver resection.

Re: new to site, looking for support

Daisey !  Was wondering how your mom was doing. My husband is the one with this awful cancer and we have also been to see Dr Chapman.Infact we just got home last night after having some final appt at Barnes to complete for the Dr to decide if maybe my dear husband might qualify for a liver transplant, either way Dr Chapman will let us know thru Valerie our contact person what they decide would be best for him. I have a good feeling about it. I hope and pray that he can get some help, this is the hardest thing I have ever been through. I feel helpless, there does not seem to be too many options. But I will keep going  no matter what. I wish more was known about this cancer. I am so glad that I found this site it sure opened my eyes and has given me so much hope.
I hope your mom continues with a full recovery!

Re: new to site, looking for support

Dear Pam, Thank you for taking the time to write to me.  Truthfully, I can't imagine losing a child.  My deepest condolences.  I am 62 and when I hear about someone so much younger dealing with serious health issues, I realize how fortunate I am to have lived a healthy life until recently.  I hope you have someone to lean on. You asked me why I didn't go to UofM.  Well, I have been a patient of Henry Ford Hospital for many years.  Also, my husband was at University of Michigan and unfortunately, his breathing tube came apart and, as you can imagine, he freaked out (like anyone would).  I will tell you the details if you request. Also, my nephew Stephen died at University of Michigan due to kidney failure.  Please let me know how you are doing.  Sincerely, Pat

29 (edited by Pamela Sun, 01 Sep 2013 18:28:05)

Re: new to site, looking for support

Hi Pat,

I understand if you or someone in your family has a bad experience somewhere, you might be reluctant to go there. I am very sorry to hear about your husband's ordeal and the death of your dear nephew. I can only say that our experiences with U of M were all good and that they did everything in their power to help Lauren. It is very difficult losing a child. We think about her all the time and wish so much we could see her again. I hope that in time it gets easier because how we feel now is not easy to deal with. I do have people to lean on. My husband is a gem and I have two wonderful children and a son-in-law. I also have my Mom, Dad, and sister along with her family. My friends are great but I feel they would not want to be around a Debbie Downer, so I put on a happy face and pretend I am ok. I hope that you will find a place you are comfortable with and get great care. Best wishes.

Love and hugs,
-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: new to site, looking for support

Lot of great advice here! I just wanted to say hello, and that your not alone. We are here for you! There is always hope! If I can help you on anyway please feel free to send me an email
Tiffanyschwantes@gmail.com

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013