NF1 and Now liver failure due to NF tumors taking over liver
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.