That is a great idea Leslie! Emily I am hoping you can answer some questions for me, as a caregiver and family member. I find that I don't talk to my loved ones openly about how I feel and my fears of re-occurance and death etc. Am I protecting them from hurt or should I be more open and worry less about scaring them and making them worry more. Most of them have not done any research that I know of. I don't know if they want to talk about all this or not.

Wendy, how old are your children? Im no expert really..Im just dealing as its handed to us the best that I can.
You have to talk with them though. They probably want to but are unsure of where to start. Its like the big elephant in the room - someone has to speak up about it. It will make you feel better to talk with them. Theyre probably just as scared as you are.

My youngest is 14, the other 2 are 27 and 28, but it goes beyond my kids, my husband, my brothers, friends, parents. I guess I would like to be able to talk to them, but I am afraid I am being over dramatic. Or like my kids it might make the to scared to think about it. I just don't know I guess. I share a story that I read here by amyk it ws very sad,with my hubby and he just clams up and shakes his head. So my guess is it is to scary for him to think about. But it just makes me feel more alone, you know what I mean?

Emily, my Mom has gone through several recurrences in the last 5 years now and is doing well so far. She cannot have anything by mouth but has gotten used to her PEG. She's gained some weight and is now up to 112 lbs. Her biggest complaint is being short of breath but she has oxygen to supplement when needed. Each time I see her she looks like she's getting a little stronger. I'm saying prayers that she will be around for a good, long while but also know that God is in charge of that. Will be keeping your mother and your family in my prayers as well. Good luck with her future appointments and surgery. Take care.

Nancy T.

Hi Emily- Your Mom is really beautiful and strong. She looks ready to take this on. I so hope that they can get her in surgery soon so she can recover and get well again. I am so sorry you are having to deal with any of this! My thoughts and prayers are with you. What an amazing daughter your mom has. This is what real unconditional family love is all about.

yall, the lady at mdanderson called me this morning and they have her scheduled for the 29th. i kinda pushed her into trying to find something a little sooner so shes going to call me back. i guess its better than nothing but i was hoping to go a lot sooner

Well we're having a really bad day. Mom looks more frail with each day. The 29th seems like an eternity from now. It seems the fistula in her neck is opening up WIDE. Her neck is also 'leaking' from where the previous surgery was. What does this mean??? Im just sick on my stomach. I want someone to take her now. I cant even look at her without crying

Hopkins' head and neck cancer center has a second opinion program that does not require travel. Info here (scroll down to Medical Second Opinion Program): http://headneckcancer.hopkinskimmelcancercenter.org/index.cfm/cID/1573

Emily, if your mom's neck is really bad she may need to go to the ER. Or put in a call to her doctor. They always have someone on call who will give you advice. Maybe you could take a picture of it with your cell and send it to them so they could see whats going on.

looks liek you have to mail them all of the records and wait for a written response