My daughter was dx with Neurofibromatosis when she was 5. I had never heard of it until they found a large softball size tumor in her chest. I took her to the ER because I felt a " ridge" in her arm. X-ray found chest tumor and her arm wasn't broke it had a plexiform of tumors. We have used so many chemo's that I can't remember every one.

4 years ago SHE wanted to stop all chemo's as she was very ill. I agreed as did the Dr. She has been on pain control only for 4 years. When the Dr told me she was terminal and gave her 2 years I was heart broken. I never told her that she was terminal and she has done well for the past 4 years. Now, her liver is failing. Blood work indicates liver failure. As of about 3-4 months she has been yellow, her skin and eyes on and off. These past 2 weeks she is almost always tired, to do the littlest thing makes her very tired. I know she is terminal and I know she will pass. What I don't know is will she just slip into a coma or will she have more pain? Will she be in pain in this coma? I was with my Dad and was his hospice "voice". That was hard and he suffered some, not because he wasn't given pain med's but because he waited for my mom before he passed. I say this because I held his hand through it all and when she came in the room and I said " Mom's here" he turned his head looked at her then turned his head looked me in the eyes and gasped and passed.
I don't want my daughter to suffer. I wish I could stop death but I can't and I need a little help on how to do this so she don't suffer or fight.

I am sorry about this but not sure where to go. She has Fentynl and morphine for pain and xanax for anxiety. I've seen almost everything so you won't offend me. Yes, she is in hospice or palliative care but without the nurse showing up. What can I expect and how long do I have? Any help at all please.

My brother in law passed due to Liver cancer. His was to far along for any treatment by the time he went to hospital.
So we stayed till he passed.

I'm sure everyone is different.
But for him his mid section was swollen and very tender,
he needed help to get upright due to it. all he would eat was watermelon and a few sips for fluid.
I don't know what his pain level was but he refused to take anything other than a relaxant.
Once he was too weak to get up to go potty even with helpers , it was only a day or 2 til the end.

One hospice lady said the bottoms of feet will darken /blacken when it is very close, but I looked at his feet to observe morn/night and didn't see any changes. So i don't know if that is a old wives tale or not.

One thing I did notice with my aunt also, it seems they are more active/lucid the day or 2 before the end. Very quiet the day of..
But that is only 2 instances I can relate so I don't really know...

She has a hard time getting up but she has for awhile. Her belly is extended but she has massive amounts of tumors. For 2 weeks she has not done well and then yesterday and today it's like she isn't sick at all. She has been eating like crazy. She is talking non-stop but the odd thing is this.. I have always said and still do say I love you to both my kids. My daughter is not so free with I love you's. Yes, she say's it but not a lot. She will go weeks without uttering those words. As with her sudden hunger and energy she is also telling me " I love you mommy " This is not her norm. but she is saying it. I know in my heart she is getting ready.. And I want her to be home as that is what she wants. I just want to do this right so she has no pain.
Also do people who are passing due to liver failure bleed a lot? My daughter lost her large colon due to it being filled with tumors and she has a iliostomy bag. I noticed a lot of blood but the Dr said there isn't anything to do. Thank you for any and all help. I just want her not to hurt or suffer. She has gone through to much and fought so hard for that to happen. Thank you all again.

My bro in law's urine was very dark/discolored - cells breaking down I suppose.