Callie,
while your doctors can't offer certainty, they would not be suggesting the surgery if there wasn't a reasonable shot it will work.

If you and Don are comfortable with the doctors, the UAB CCC looks like a very good place for treatment. It is an NCI designated Comprehensive Cancer Care Center - and only the best of the best have that designation. As others have said, a second opinion is always good, but if you do not opt for it, you are in a good place now.

As other have suggested, call in all your favors for support for yourself and help with your kids. Someday you will pay their help forward with kindness to others in trouble and distress.
Maria

His mom and dad are coming down to help! Thank God!! If he goes through with the surgery I'm asking them all to come down! I know I can't do this alone again. I've installed the talk to me app on his phone, but he won't use it. I was at the pharmacy today and the lady asked me how Don was doing and I just burst into tears and couldn't speak! So humiliating. Oh well I'm sure there's more to come. I can feel the tears trying to bust out constantly and my voice is consistently shaky when talking about anything. I was finally able to eat a little this afternoon. This mucus that keeps coming out of his trach is non stop! I feel so sorry for him having to constantly suffer through that. I pray it goes away soon. I know Don's glad his parents are coming down, but he hates them to see him like this. It was so odd, his mom asked me Monday before the results if he would care if they came down. He told me to tell them to wait until he's feeling better and able to speak to them. Then the results came and he won't be able to ever speak again with his voice. So sad! But I don't care how we have to communicate as long as he's here! We've been communicating differently for months anyway! He did tell me he would like a second opinion

But he hasn't told me what option he's leaning more towards. Well thanks for listening to me guys! You are all so inspirational!!
Callie

Ok, then go for the second opinion ASAP - don't worry about which option until you get it. That is something concrete that you can do. I am going to put in a plug for Dana Farber up in Boston for the second opinion. Remember, you and Don don't have to trapse up there, just his medical records. Second opinions happen all the time - no insult to the doctor in any way, shape or form.

Omg, thank you!! I did not know that, I thought the patient had to be present.
Callie

That's great to know Maria. I didn't know that either.
Praying for you guys Callie. You are on my heart constantly.
Will continue to stand with you in your battle.
Blessings,
Kathy

Dear, Callie.

My surgical oncologist/ENT is the Director of Head and Neck Surgical Oncology & Director of Normal Knight Center for Hyperbaric Medicine. He is at Massachusetts Eye and Ear Infirmary, 243 Charles Street, Boston, MA 02114. 617-573-4100

He is among the best of the best. He is a fabulous doctor and person! He also has privileges at Mass General. He is a full Harvard Professor for their School of Medicine. I know that there are some doctors from Dana Farber that will refer to only him for difficult cases.

I know he will be out of town the last week of July and first week of August.

Daniel Deschler, MD

I wish you the best of luck. Please send me a private message if I can be of any assistance at all! I will give you you my phone number if you would like.

Take care,
Kerri

Oh Callie - I'm so glad to hear that Don's Mom and Dad are coming down. It will be such a help to have them close. I'm sure they must be so worried and want to be able to do something to help you and the children. When you get a chance, you could make a list of some of the most pressing needs - like trips to the pharmacy for meds or doing something with the children, laundry, meal prep. etc. If anyone asks you or your parents if there is anything they can do, they could be shown the list and they can choose for themselves which they feel most comfortable doing. Keeping busy will help them, too. I'm so glad you were able to eat something - it's important to keep up your strength. You've been doing so much and you need to take care of you, too. Let us know what happens with the second opinion. Sending big hugs to you and your family.

Callie

There is still hope since the major surgery could work and Don could be in that 25%. We have a poster on the OCF forum who also lost his voice box yet he (dribrook) is giving a speech at the OCF walk in New Jersey this September. It's not that Don can never speak again, others without voicebox use various devices. Here is a link to one of his posts which has his blog on not only surviving that type of surgery but thriving Dr brooks post


25% sounds better than 5%, but remember for each one of us, the odds are always 100% or Zero. It's only in the aggregate that those statistics apply. So there is hope here that Don can make it. You and the two children are the motivation for him to fight this. Others have done it and he can too
Charm

Thanks guys! I'm feeling better now! I'm ready to kick this sob in the face! Now if I can only convince Don there's hope! I called the cancer center of America in Philadelphia. They said they would pay for us to fly up, our hotel and food this is for our second opinion. They said we could have an appointment within a week! It all just depends on if our insurance will pay for it! I find out tomorrow. Pray they do!!! Don's mom, dad, and brother have been a huge help!! Don said he feels like there is a ton of mucus in his throat. I told him maybe it's from the trach just feeling different again. He can't remember what it felt like before. Has anyone else had this problem? Also he says he is craving a tall glass of coke. He can't even stand having the speaking valve in