1

(7 replies, posted in In Remembrance)

Dad was called home around 8 pm on November 2. My mom, my siblings, myself, our spouses, and his younger brother were there to comfort him as he left this world. He is very missed but we are glad his pain is gone. He fought a hard battle (was diagnosed July 2011).

Dad has been on hospice care for a few weeks now. We took him to Disney last week to fulfill his final wish. The whole family was there (14 of us). He got to spend a couple hours at the parks 3 days.

He is going downhill fast and I know the end is very near. He does not sleep. He thinks he does, but he doesn't. I kind of think it is to just keep him going. It is frustrating to mom because she has to be up all night helping him get up an down and make sure he is safe. I am going to come when my husband gets off of work this week (2 am) so she can sleep for awhile.

They have tried Ativan but it made him dangerously confused and out of sorts. I assume most sleeping or anxiety drugs will do the same thing as his liver cannot metabolize them?

Also, what else can I expect in the next little bit? I feel I have asked before but I don't remember and can't find my old posts from my phone.

We were contacted by a company looking for an event in the Duluth, GA area. If anyone knows of any of is planning any, please contact me at erin.huff@cholangiocarcinomanospam.org (remove "nospam")

4

(18 replies, posted in Good News / What's Working)

Randi, i just realized i meant to come find your update. I am so glad to see this.

5

(6 replies, posted in Members' Cafe)

I saw kris and pam talking on facebook and thought...we should have the people in the eastern part of US meet in a central location for a night or two at a hotel and dinner out, etc. I am in central/north kentucky and i think there are a lot in ohio/pa, etc. Somewhere like cleveland? A sort of CC family reunion.

6

(13 replies, posted in General Discussion)

betzeegirl wrote:

My husband (the one with CC) and I are professional jazz musicians, and we could provide music for CC fundraising events on the east coast (we live in NJ)--just a thought!!!

How wonderful!

As i said above, i will be helping people plan events for ccf. Can you contact me so i can have your info for a resource for those in the area? That would be wonderful.

7

(13 replies, posted in General Discussion)

You will be seeing more of me regarding fundraisers wink

Talked to stacie today and i am thrilled to be volunteering for ccf helping others plan fundraisers. The wheels in my head are already turning...fast!

8

(13 replies, posted in General Discussion)

You can shoot me an email if you would like and i can send you my phone number so we can chat if you would like. I would absolutely love to see more events around the country.

It was quite a bit of work but so worth it. I had a lot of volunteers, several of whom secured sponsor money and prizes. On top of that, we had about 70 volunteers (more than we needed, but it was still wonderful). We did a 5k walk/run and 1 mile walk. There was no entry fee; donations only, but i think we made more money that way.

i had to figure a lot of it out on my own and with the help of google. I am excited to use what i learned to help others plan these events. We can't find a cure without raising money and awareness!

Let me know how you would like to talk so i can help.

I think it would be awesome to use "to cure cholangiocarcinoma" as our slogan and use the memorial name and event in front (like the tim hargis race to cure cholangiocarcinoma, sue smith cycle to cure cholangiicarcinoma, etc)

9

(13 replies, posted in General Discussion)

http://prayingfortim.com/2012/06/update … carcinoma/

It was such a great day!

10

(10 replies, posted in General Discussion)

I pray she is a candidate. She certainly is a trooper!!

11

(21 replies, posted in General Discussion)

I tried to find the "like button" for gavin's comment.

Oops!

12

(9 replies, posted in General Discussion)

I am so sorry for your loss.

13

(82 replies, posted in General Discussion)

Grover, good to hear things are looking up now. I think of you often, as  i remember you were just starting to run before your diagnosis. I hope you have more running in your future smile

14

(10 replies, posted in General Discussion)

If anyone else wants to come to lexington, ky on june 9 for our fundraiser, they can meet me and tiffany wink

15

(10 replies, posted in General Discussion)

Tiff, i am so excited to meet you. I would love to take you guys out to dinner. Dad will be excited, too. We have told him all about a lot of you. He loves the gaither gospel band so mom told him you were going tha night. He was jealous!

Thanks everyone for the encouragement, love, and advice

Marion, i don't know things would have been the same a few years ago. I went through a lot emotionally the last few years, and i think i was preparing for this.

I hope the chemo is able to help with the pain. He is meeting with the surgeon to consult about the hernias. I will keep you guys updates.

16

(10 replies, posted in General Discussion)

Scans yesterday revealed that the cancer has spread to the tissue on the abdominal/chest wall. The doctor is going to start gemzar/tarceva as already planned.

It turns out the pain is from this tumor and not the hernias as thought (though the hernias might still be causing some pain).

So, obviously the radiation spheres weren't the answer for us. We were told it is growing quickly.

I am looking for opinions/advice for pain relief for dad. What about the pain patch? He is taking percocet with not much relief. What are the other options?

We aren't being given stages or prognosis. Should we be? Should we have to ask for it? Dad hasn't asked and I want to...but not necessarily in front of him. I am on the list to get information and I am tempted to call and talk to the doctor. We were kind of dumbfounded at the appointment on Friday as we were hoping/expecting better news...or not such bad news.

I'm sorry I don't post often. I pray for all of you often. I do read for updates, but it is difficult to post on message boards from my phone/tablet.

Erin

17

(21 replies, posted in General Discussion)

Thinking of you and wishing you better news in the near future.

18

(4 replies, posted in General Discussion)

One week after the second lobe was done, dad is feeling better than he has in a feally long time. He sounds like himself, it is amazing the difference. Seriously amazing. I didn't expect this. He got out and threw ball with my son for about five minutes on saturday and i don't know the last time i have been so happy. He is able to walk around the block, and is working in his office.

I hope this is the same type of updates i see from those doing these, too smile

University of ky. The doctor wss brought here to start the program here. He had worked for a long time with the other type of beads, but prefers these.

Dad had a heavy dose on one lobe (the one with the large tumor). Today he had about half that on the other lobe. I just asked him and he said he felt nothing...no pain, no pressure, nothing. He is under conscious sedation and talks during it to the doctor.

His fatigue was the worst side effect. Honestly, we aren't quite sure beyond fatigue what was causing the other side effects (nausea a.d loss of appetite) because hewas dealing with kidney stones, too. The stones are gone so we will see how this time goes. I will update in a week.

Take care and lauren is in our prayers.

Pam, dad is getting his second treatment today. He said yesterday he feels better than he has since he started cisplatin. He was extremely fatigued, especially for the first week. He could stay awake long enough to move to another room. He was thin to start with, and lost at least 18 lbs. I would encourage Lauren to try to put on a little weight before starting. Let me know whatever specific questions you habe and i will check back later.

22

(8 replies, posted in General Discussion)

To respond to the previous poster, my dad went to have his small tumor resected, only to find out it was far too large to resect.

Bumping this thread up!

Is anyone up for sharing their story this week or next?

Dad had his left lobe done thursday and goes back for the right in three weeks.

25

(82 replies, posted in General Discussion)

Wow, i am just so happy to hear this. Thanks for the update.