My brother is undergoing surgery today to remove 1/2 his tongue, the right floor of his mouth and the right jaw bone. The doctors came out about 9:30 a.m. and said he was doing great. It is an 11 hour surgery so we have a while yet. The tumor was bigger than expected and they will be removing the jaw bone from the middle of the chin to his ear. The plastic surgeon is working on removing the bone from David

Tonya: My thoughts are with your, your family and your brother. You have been a great support to your brother & family. I know because I remember your very first posts - I am the sister of an oral cancer survivor and I knew what you were going through. You have done a great job getting your brother good treatment. My thoughts are with you all. - Candace

Tonya
I had a 12 hour operation, no bone grafts but lots of skin grafts, prayers and good vibes..
Sunshine...love and hugs
Helen

Tonya,
Hope all is still going well and that surgery is over...it's hard at first what you see but the swelling goes down and drainage tubes go away and things get better. Prayers and thoughts are with you and your brother.
God bless,
Debbie

Thanks for the kind words of support. I can really use them right now. David is out of surgery. The tumor measured 4 inches. They tried to save all they could but had to remove 5/6 of the tongue and don't expect him to every speak again. They also had to remove the right jaw from chin to ear, a little bit of the upper jaw, almost all the floor of his mouth, and part of his throat. They did a neck disection and removed the lymph nodes. The floor was rebuilt with chest muscle and the jaw with a part of the leg bone. However, due to chemo damage from a previous medical institute, the vessels were almost destroyed on the right side of his face and even with the plastic surgery that side will be "saggy". They said swallowing will be very difficult if not impossible and he will remain on a feeding tube from here on out. They told my mother that if David hadn't been this young they wouldn't have attempted this surgery at all. I'm glad the surgery is over - he's been in so much pain. Our efforts now will be on keeping his spirits up. I know foremost on his mind will be his speech. I believe he will be able to talk someday because he is such a strong person. It may take years, but I won't give up on him. I have to remember all these things are actually small blessings, we still have him and hope for a bright future, though I know from the shared stories on this site that the challenges ahead will be great. Does anyone have any ideas about the speech options? What about those machines they put on your voice box that allows you to "talk" through the vibrations? Are there any hand held computers available yet that allow you to type your message and then it says it? I know I am getting ahead of myself, but I also know my brother will be so worried about how this will effect his job and I just want to reassure him there are options. Well, it's been a long day as you all know and I will sign off now. I'm sure you will hear plenty from me in the weeks to come as we struggle to deal with this.

Tonya,

I don't have any answers for your questions, but you will find a way. May God bless and keep you and yours.

John

Tonya
Please try to stay positive...
Sunshine.. love and hugs
Helen

Tonya:
Your family has our prayers. Prayer changes things!
God bless!
Darrell

Tonya,

I hope you can get some rest now. You will need a lot of strength in the weeks, months, years to come. Your brother is lucky to have you.

Talk to a speech pathologist about the technical solutions you're looking for. I don't know for sure, but I'll bet some of them do exist... I know any Mac can speak a typed sentence, but I imagine there are some devices that turn a few keystrokes into whole words/sentences. Seek and you shall find.

Ken

Hi Tonya,
I had the jaw surgery your brother had, with the jaw replaced with the bone from my leg. I had it done in April of 2003. I was told I would need speech therapy to learn how to talk again. I was talking pretty much normally the day they took out the trach, surprising everyone. I did not have any surgery to my tongue so your brothers case will be more complicated, but don't give up hope of him talking again.
Please keep us updated on his progress.
Minnie

Thanks for all your support. I am feeling better today and ready to fight this vicious disease once more. I have found a wonderful device that will let David type what he wants to communicate and it will say it electronically. He can even use it on the phone. I am talking to speech consultants about it today. This is not the end of the road, just a big tree that fell across our path and we will find a way around it. The doctors said David is doing wonderful. He is healing well and they even had him "sitting", or more like leaning back, in a chair yesterday with supports around his head. We will see him Friday (the hospital is over 1,000 miles from here). I hope he is out of ICU by then so I can sit with him during the night. I'm going to take my laptop for him to use in the meantime. His motor skills are still shaky, but maybe they will improve during the week.
Before this is over maybe I won't be just asking for help all the time and will be able to assist others on this forum.
Thoughts to all of you and thanks for your help.

Tonya, you keep that positive attitude!!! You have no idea how much that is going to help your brother get through this. He is lucky to have you for a sister! I am fairly new to this forum, my husband finished radiation treatments on his throat 2 months ago and that's when I found this website. I feel so blessed to have found this site, there are so many caring people here who really want to help. I have learned so much here too. I pray that your brother will win this battle. As I've learned from the people here, don't EVER give up!!!

Best of luck,

Shelley

Thanks! I just received the news that they will have him walking by Friday and home in 2 weeks! Amazing - of course he will still have to go back every other week for 2 months. Those will be long trips, but worth it.

Tonya, glad that both of you are feeling better.

I am curious where the 1000 miles takes you? (that is a pretty big area for me to guess.)

Take care

Tonya, good news on the speach front. Glad you were able to find something to help your brother with speaking. It sounds like he is pretty strong to be up and about and sent home so quickly after such a long and arduous surgery. God bless you all.

tonya. glad to hear your brother is doing so well . stay as positive as u have been

my best wishes
maz

Tonya, thanks for sharing the good news about your brother. My thoughts and prayers go out to both of you! God Bless, Carol

Mark,
We are in the very top of Texas and he is at MD Anderson in Houston, near the bottom. We leave tomorrow. I am very eager to see him.
Tonya

Tonya
Just want to add my prayers for you and yours, may God be with you.


Joan

Thank you all. We are back from Houston. He is doing very well, considering. A lot of swelling but his wounds are healing very nicely. He is up and walking some. He's having problems keeping down the liquid food they are putting in his feeding tube so that is awful when he gets sick. He has a trake (sp?) and we are learning to take care of that. Hopefully he will only have it a couple of weeks, if all goes well. I am trying to emerse myself in sign language books so I can began teaching him and our family when he gets home. My husband gently reminds me that our toughest days are still ahead. On one level I am aware of that, but on another I know I will have no idea how rough until those days are here. I hope that makes sense. I asked his wife what kind of time they had given him (it's the control part of me - I need to be prepared), but she said she didn't want people talking about that or counting his days. She's right. So I will keep reminding myself how grateful we are for today and learn to be at peace with that.
Thanks again, and please keep David and his little family in your prayers. You will each be in ours.
Tonya

Tonya
Glad to hear David is coming along well. Does he have a port? my Hubby could not stand the tube feedings and they ended up feeding thru the port, much better.
I can fully understand his wife`s reaction, I actually had a "friend " tell me, " He`s not going to make it, you know that don`t you ?". I wanted to slap the stuff out of her. Well we showed her so there!
Keep in touch .
Marica

Tonya
Is your brother using a slow gravity feed system? I could only tolerate syringe feeds that took 15-20 min every 3-4 hours or everything came hurling back, just a suggestion...
Sunshine... love and hugs
Helen

More about PEG feedings. Helen is correct about slow is better. He should also be sitting up as though at the table when fed, and stay sitting up for a while after finishing. The gravity feed system I used had a speed control, so it was possible to have the liquid just about slow dripping if the patient wished. Your brother is very fortunate to have such an involved and concerned sister!

Tonya, glad to hear that he is up and about! As to the "time" they have given him, there is NO one on this earth that can answer that question. He very well could survive this and out live his children. Do a search here on statistics and you will find many good discussions about the subject. Every day is a blessing for any of us. No one knows how many minutes we get. Don't dwell on that at all.

Take care

Tonya,
I just wanted to add to what Mark said that his treatment protocol sounded like a curative plan to me, not palliative. He was blessed to be able to have treatment at the top rated comprehensive cancer center in the world - that would make his odds very good.

Thank you all. He is on a slow feed drip. They are trying another brand today. He was "backed up" due to all the pain meds and now is doing better. He didn't throw up last night or today at all. YEAH! A speech therapist there is putting David's wife in contact with a man who had his entire tongue removed about 1 1/2 years ago and is speaking well today. DOUBLE YEAH! I know with all my heart that if it physcially possible David will regain his speech. Their little girl is with them. She got to meet "Pedro", a puppet who had a treach and an I.V. The conselor unwrapped the bandages on the puppet's neck and explained David's surgery to her. Yesterday David coughed and she jumped up and grabbed the suction tube and started cleaning around his treach, like she had seen us do. Kids are amazing.
Best wishes to all.

Hi Tonya,

Just wanted you and David to know that talking without a tongue is possible! I had a total glossectomy, left and right neck dissection in July of 2003. I also had a feeding tube and a trach. I had both of these removed after 8 1/2 months and also worked with a speech therapist once a week for about 4 months. I have a palatal drop mouth prosthesis which helps me to speak pretty darn clear! I work full-time and people seem to understand me just fine. Although eating is a challenge, it's very doable as I'm able to eat just about anything I set my mind to (chicken, steak, seafood, pasta, etc.). So all in all I just wanted you and David to know that it is possible to eat and speak after extensive surgery to the tongue. I won't kid you, it's a long, hard and often rocky road but it's very doable with some determination. Tell David to hang in there, it does get better!

Hugs, Nancy

Nancy, I think you are awesome! Carol

I have some wonderful news I wanted to share. David had a speech evaluation yesterday and they said he could make vowel sounds as well as m, b, p. My mom gave him the phone and he said, "I love you." I cried. It wasn't completely clear, but there was no doubt what he said. The speech team has also put him in contact with a man who lost even more of his tongue than David did and after 1 1/2 years speaks well. I truly believe if David is doing this well now, one week after surgery, he will be able to accomplish more than we ever hoped. We had received so many miracles just getting him to where he is, that I never even expected this. I know it will still be a long road, but this was the boost by brother needed right now. His little 4 year-old daughter was so excited and that was the first thing she told my sister, "My Daddy said he loves me." Thank you for your prayers and thoughts and please know you are all on my mind and in my heart.
Tonya

Nancy - Sorry, your post didn't show up on my screen until after I posted, my computer does that sometimes. Anyway, thanks you so much for sharing your story. I have longed to hear from someone who has faced the same odds and overcome them. They have talked to David about the palatal drop mouth prosthesis and I'm sure he will be trying that. I am so happy for you and you are such an inspiration. I will tell David your story. I know it will encourage him. He's never been afraid of hard work and I know he will give his recovery everything he has.
Thank you again, Nancy.

Awesome news Tonya, will keep you and David in my prayers! He is doing wonderful!!!!!! God Bless, Carol

Tonya
Thanks for the update, tell David to keep up the good work, IT CAN ONLY GET BETTER..
Sunshine...love and hugs
Helen

Tonya,
I am so glad your brother is making so much progress so quickly. It is a great boost to the morale and will help him to continue to improve. I have a permanent trach so if he has questions on things like showering or clearing mucous, email me at [email protected]. I posted stuff once, but don't know if you can find. Meantime, tell him we are all pulling for him and sending good vibes his way.

Take care,
Eileen

Tonya,

There is light at the end of the tunnel!!!! Thanks for sharing such a personal posting. It uplifts us all to hear good news. Your happiness
jumps off the posting. He is a lucky man to have you as a caregiver. Keep up the good battle.

Danny Boy

David and his wife are home from the 2nd week checkup and all looks great. I signed him up for this site last night and told him and his wife what a great source it is for information and just to know you're not alone. He's doing well and we are excited about the hope the future holds. He is a survivor.

I'm so happy to hear that good news Tonya. How is he doing with walking? It took me some time but I walk pretty good now.
Take care,
Minnie

Hi Tonya; Please tell David and his wife that they have a new set of neighbours, the Oral Cancer family, who look forward to getting to know them.
What a wonderful success story we have heard thanks to you "Sis"
May fair winds follow all of you on the road to recovery.
Fran

Thank you. David is walking great. The doctors had to remove his lower jaw and part of the top and there wasn't a place to attach the bone to so they took soft tissue and rebuilt the jaw with that. No having a bone graft has really speed up the healing of his leg. The wound looks great and is healing well. His jaw looks great, too. They did a great job. When my aunt commented on how great his doctor did and that you wouldn't even be able to see a scar, he wrote, "Scars don't bother me, I'm just happy to be here." That's when I knew we were on the road to recovery. Thanks again.

Great news about David, Tonya, so happy to hear it. I like his attitude. Each day truly is a GIFT!
God Bless, Carol

Hello Tonya,

Nice to read such a positive posting!!! There is light at the end of the tunnel!! Keep up the good fight David. I love your attitude!!

Danny Boy

Hello Tonya, David and your families, I am so glad that you are all improving after such radical surgery. Your attitude, love for each other and smiles come through in your posts. Love to you all and best wishes from Helen

Dear Tonya, David, and your families,
My prayers and wishes for a quick recovery and a long and prosperous future. You're an inspiration already.
Lawrence

Tonya,

When I read the comment from David I could feel the tears welling up in my eyes. I know how scary it must have been to face such a rough surgery after all he had to endure up to that point but I just had a feeling that his trip to Houston would help immensely. I am overjoyed to know that he gets to hold his wife and his daughter in his arms as he travels the road to recovery. What a blessing and how wonderful it is to have a sister like you to persist and keep things moving like you did. Your rewards in life will be great.

Tell David that I am thinking of him often and glad he is doing as good as he is.

Ed