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STARDUST53's Photo STARDUST53 Posts: 4,528
1/11/18 1:51 A

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My daughter knows a bit more at this point and texted me this evening. It explains the outcome they hope to achieve after her larynx is removed. In her own words she texted:


“The first 4-6 weeks, I'll use a voice machine. And when I can swallow and eat, he'll put me under and place a disk in my throat that vibrates. My doctor said I'll never have a loud voice and that my voice will probably be deeper than it is now, but I don't care. At least I'll still be able to talk.”


Her text answered a lot of unknowns. So it is going to be doable. We are going to be fine. I cannot thank you all enough for surrounding me at a time that everything felt like it was crashing down.

~:|:~
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((**.·'..·* Stardust ~:|:~*...* Be still, and know that I am God (Psalm 46:10)
~:|:~

“Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.”
~ ~ Golda Meir


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STARDUST53's Photo STARDUST53 Posts: 4,528
1/10/18 9:25 P

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CELTICLASSINLA thank you for your suggestions. There are many YouTube tutorials that I saw a day ago that we could start with. I also thank you for all the info you brought out on the devices that are now available.

She has many decisions that need to be made in a short time, and knowing her, she will weigh it all out and make the most out of what will give her the best end result. She is very resilient. It was me who was having a very scared moment at the time I posted. The entire family is doing much better two days after the fact. But I do appreciate the care of others in this moment that we find ourselves. She has already fought her way back from stage 4 cancer, which was amazing! The main thing is we still have her!

~:|:~
*.·,.·'**))
((**.·'..·* Stardust ~:|:~*...* Be still, and know that I am God (Psalm 46:10)
~:|:~

“Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.”
~ ~ Golda Meir


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STARDUST53's Photo STARDUST53 Posts: 4,528
1/10/18 9:00 P

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Casey, that is an excellent idea that I will pass on to her. We still have time because she is on the scheduling side of this right now. Thank you for that suggestion!

~:|:~
*.·,.·'**))
((**.·'..·* Stardust ~:|:~*...* Be still, and know that I am God (Psalm 46:10)
~:|:~

“Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.”
~ ~ Golda Meir


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CELTICLASSINLA's Photo CELTICLASSINLA SparkPoints: (13,334)
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1/10/18 6:57 P

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I am late deafened so I am verbal but there are some very good resources for learning ASL online and you can make it a family affair -

Several years ago I worked at a rehab center where one of the young women had had a tracheostomy. She had a small device she cobruld type sentences on and the machine would talk. With this particular device she could even select a voice pattern - young woman outgoing, a variety of accents and I think that it now may be possible to record a number of things in your own voice to play back when you are no longer able to speak. A good Occupational or Speech Therapist could direct you to the proper sources.


Another communication tool is an electolarynx. This is not a new technology but a voice synthesizer that produces mechanical like speech. A friends uncle had one back in the 70s already. It's a good option and is generally covered by insurance.

CASEYTALK's Photo CASEYTALK Posts: 1,654
1/10/18 5:33 P

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Can you record her laughter, or do you have a recording of it? If you do, maybe she would like to have it so she can play it sometimes when she wants to laugh. If you can still record her before the surgery, maybe you can record things like, "I love you, Mom."

And good for you for crying and letting yourself grieve. You'll be stronger for it.

Thank you for taking the time to write about it here. We care. HUGS.

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-JAMES-'s Photo -JAMES- Posts: 12,133
1/9/18 3:54 P

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LADYSTARWIND,
I don't know why I didn't think of American Sign Language. I have a deaf cousin, and I've learned some sign language.

Its very expressive indeed.

James


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STARDUST53's Photo STARDUST53 Posts: 4,528
1/9/18 2:28 P

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I thank each of you for your input and suggestions. I am doing much better emotionally today. It’s one of those times that our family will hold on tight and get through this together. I will take each comment to heart, I promise!

~:|:~
*.·,.·'**))
((**.·'..·* Stardust ~:|:~*...* Be still, and know that I am God (Psalm 46:10)
~:|:~

“Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.”
~ ~ Golda Meir


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LADYSTARWIND's Photo LADYSTARWIND Posts: 5,372
1/9/18 1:01 P

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You, your daughter and families have already been through so much-- you have my prayers and best wishes.

I have a friend who is an occupational therapist and one of her specialties is helping people to learn American Sign Language. It is a beautiful, expressive full language! I would encourage you and your daughter to try and take classes together as soon as possible. (check your local community colleges, Society for the Deaf, and with occupational therapists for leads...)

Her laughter will not come from her voice, but from her love of Life, which you have given her and share with her. All the best...let us know how it is going through this transition.
patti

Patti
"The only thing we have to decide is what to do with the time that is given to us."
Gandalf: Lord of the Rings


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1/9/18 12:27 P

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Stardust,

I am so sorry to hear about your daughter. The stress on your family has probably been overwhelming. So you vent as much as you need.

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FREEDOM-NOW's Photo FREEDOM-NOW Posts: 29
1/9/18 9:40 A

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SLIMMERKIWI's Photo SLIMMERKIWI SparkPoints: (272,359)
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1/9/18 3:10 A



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I feel for you and your daughter. I can certainly understand the worry, stress and grief.

If you haven't already, talk with your Dr about what is going on, and ask for a referral to a Therapist who specializes in grief. Also, see if there are any groups around for situations such as your daughter is in. Her specialist should be able to point her in the right direction. It would be invaluable for you as a family to learn how to get through from those who are in that situation, for whatever reason.

BIG hugs,
Kris xxx

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-JAMES-'s Photo -JAMES- Posts: 12,133
1/9/18 12:36 A

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Sorry for you daughters condition.

You are right on your emotions. Its really no good to hold them in. They are part of what makes us people.

James


All time highest weight : 217 pounds

Starting weight : 195.0 pounds (June 7, 2012)
Final weight : 168.2 pounds (July 23, 2013)


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STARDUST53's Photo STARDUST53 Posts: 4,528
1/8/18 11:25 P

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I just need a place to unload my emotions.

Today our daughter had an appointment to discuss surgery to reconstruct her throat. She has been tube feeding for eight months. She underwent radiation and chemo from June through September last year for larynx cancer. In that appointment today, she was informed that more than likely her cancer is not gone and that she should be preparing herself that her larynx should be removed.

I am heartbroken. I have to stay strong for so many people around me. But tonight I feel like I could cry a bucket of tears. We thought it was over. Tests said it was over. But one of her doctors late October or early November was saying opposite of what the tests were saying and now almost three months later he was right and the cancer has had a head start again.

I am not angry or resentful that cancer has hit our family. I accept that sometimes terrible things happen. But I am just so scared and there is no way to fix this. And there is no one reading this that can fix this. So tonight I finally cry. And tomorrow I will find out how I can be supportive and useful. But tonight, I get to grieve the loss that is about to occur of never hearing that familiar laughter that has always brought joy in my heart to hear. Tonight I get to cry.



~:|:~
*.·,.·'**))
((**.·'..·* Stardust ~:|:~*...* Be still, and know that I am God (Psalm 46:10)
~:|:~

“Make the most of yourself by fanning the tiny, inner sparks of possibility into flames of achievement.”
~ ~ Golda Meir


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