DOES IT EVER STOP????

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  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #22
    Scotch Freckles said:

    Just when you think
    SemperFi Marine,

    Just when you think it can't get any worse, only better, the bottom falls out again. To some there is only an obis with no answers. Bells Palsy is related to shingles, as we have been told. My Marine came down with it a couple of months ago, which scared the begebes out of us too. Not a stroke on top of all his other ills, I did't think he could take more. He is working through the Bells Palsy slowly. Meds have worked, plasy is slowly going away. He keeps exercising his face muscles by blowing up his cheeks. My Marine got me through the rough and tough times of bc, but is sure wasn't like your Omaha Beach. Were you given ointment to keep her eye moist until it is able to close by it's self again. We were given a type of goggle for showering to keep water and shampoo out of eye also.

    As always, we are all here for support to one another, even on bad days. With children to also get through this life test your strength will be tested more than you ever thought. With this I leave you with my heart felt thoughts and prayers.

    Well, it appears that you have a ruff and narrow road ahead
    of you, Dear Thomas. My stomach is in knots just reading the trials of your wife and her chemo treatments.

    Please keep up your fighting spirit, as you and your wife are in the thersholds of WAR.

    God bless you, your strength and love for your wife and family.

    Strength and Courage:

    Vicki Sam
  • Katz77
    Katz77 Member Posts: 598
    #23
    Bless you both. I don't know
    Bless you both. I don't know what to say, but your all in my prayers. HUGS, Katz
  • carkris
    carkris Member Posts: 4,553 Member
    #24
    Scotch Freckles said:

    Just when you think
    SemperFi Marine,

    Just when you think it can't get any worse, only better, the bottom falls out again. To some there is only an obis with no answers. Bells Palsy is related to shingles, as we have been told. My Marine came down with it a couple of months ago, which scared the begebes out of us too. Not a stroke on top of all his other ills, I did't think he could take more. He is working through the Bells Palsy slowly. Meds have worked, plasy is slowly going away. He keeps exercising his face muscles by blowing up his cheeks. My Marine got me through the rough and tough times of bc, but is sure wasn't like your Omaha Beach. Were you given ointment to keep her eye moist until it is able to close by it's self again. We were given a type of goggle for showering to keep water and shampoo out of eye also.

    As always, we are all here for support to one another, even on bad days. With children to also get through this life test your strength will be tested more than you ever thought. With this I leave you with my heart felt thoughts and prayers.

    I search my head and heart
    I search my head and heart to find something comforting to say. this is truely a rough time. try to take it one issue at a time. I hope they gave her something for the constipation, and to keep things moving, as the pain meds slow the action through the intestines. all the vomiting,depletes her from a fluid and nutritional standpoint. If you can fix this it will make her more comfortable. do you mean that she doesnt make sense because of the facial paralysis?
    My heart goes out to you I think about you all, and wish for you to have some sort of break. prayers and hugs please let us know we really care!!!!!!
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #25
    marines911 said:

    Questions?
    Did they do a spinal tap as well for the CSF? What exactly is the concern if the cancer is in her fluid? We have an appointment on Thursday to discuss the results, but not sure exactly what the concern is.

    Thanks

    Good luck with your
    Good luck with your appointment on Thursday. Let us know what you find out.

    Sending prayers,

    Debby
  • marines911
    marines911 Member Posts: 68
    #26
    carkris said:

    I search my head and heart
    I search my head and heart to find something comforting to say. this is truely a rough time. try to take it one issue at a time. I hope they gave her something for the constipation, and to keep things moving, as the pain meds slow the action through the intestines. all the vomiting,depletes her from a fluid and nutritional standpoint. If you can fix this it will make her more comfortable. do you mean that she doesnt make sense because of the facial paralysis?
    My heart goes out to you I think about you all, and wish for you to have some sort of break. prayers and hugs please let us know we really care!!!!!!

    BABBLING
    The babbling is not from the Palsy, but she will say things that are weird, like she asked for her car keys, she told me to put a gate around our 2 year old. When she sleeps, she will start talking, but will stop in mid sentence. Not sure what this means, but my 6 year old is kind of scared of seeing her face droopy and how it is hard for her to speak, she sounds like she been shot up with novocaine.

    On a good note, the kids and I went and got my wife her birthday gift. My two younger daughters used their build-a-bear coupons and used them to get her a "Soft Hugs" bear with a UCLA t-shirt, they even recorded their voices saying "Mommy your the best, WE LOVE YOU forever and ever" It brought tears to my eyes and I know that she will love it.

    I have read the concern about the CSF and it should be clear and this fluid acts as a buffer and if the cancer has entered the spinal cord fluid that could be the cause of the pressure on her nerve, however I'm concerned that this will disqualify her from the clinical trial, but will have to review the trial information again and ask the ONC just to make sure before I call UCLA and let them know what has changed.

    Thanks all for the prayers and love that you all send our way, and we pray for all of you as well.

    Thomas
  • Aortus
    Aortus Member Posts: 967
    #27
    marines911 said:

    BABBLING
    The babbling is not from the Palsy, but she will say things that are weird, like she asked for her car keys, she told me to put a gate around our 2 year old. When she sleeps, she will start talking, but will stop in mid sentence. Not sure what this means, but my 6 year old is kind of scared of seeing her face droopy and how it is hard for her to speak, she sounds like she been shot up with novocaine.

    On a good note, the kids and I went and got my wife her birthday gift. My two younger daughters used their build-a-bear coupons and used them to get her a "Soft Hugs" bear with a UCLA t-shirt, they even recorded their voices saying "Mommy your the best, WE LOVE YOU forever and ever" It brought tears to my eyes and I know that she will love it.

    I have read the concern about the CSF and it should be clear and this fluid acts as a buffer and if the cancer has entered the spinal cord fluid that could be the cause of the pressure on her nerve, however I'm concerned that this will disqualify her from the clinical trial, but will have to review the trial information again and ask the ONC just to make sure before I call UCLA and let them know what has changed.

    Thanks all for the prayers and love that you all send our way, and we pray for all of you as well.

    Thomas

    Thank you, Thomas
    Thank you for the updates - even when the news is not happy, we all need to know what is happening so that we can pray all the harder for you and your wife and our family. I'll bet she really will love her UCLA birthday bear!

    God Bless,
    Joe and Moopster
  • Megan M
    Megan M Member Posts: 3,000
    #28
    Katz77 said:

    Bless you both. I don't know
    Bless you both. I don't know what to say, but your all in my prayers. HUGS, Katz

    Praying for you both!
    Hugs,
    Praying for you both!


    Hugs, Megan
  • missrenee
    missrenee Member Posts: 2,136 Member
    #29
    Megan M said:

    Praying for you both!
    Hugs,
    Praying for you both!


    Hugs, Megan

    Thomas, it's all been said but
    I'm offering up my prayers and positive energy to you, your courageous wife and your children. May your suffering be eased and may you all find peace in your hearts. Your trials seem insurmountable, but try to keep going, putting one foot in front of the other moving forward. You sound like a magnificent man and a great family. I offer you this quote, hoping it gives you some comfort. I don't know who the author is:

    Courage isn't always a loud roar.

    Sometimes courage is a quiet voice at the end of the day that says,

    "I will try again tomorrow."

    Hugs, Renee
  • ms.sunshine
    ms.sunshine Member Posts: 707 Member
    #30
    missrenee said:

    Thomas, it's all been said but
    I'm offering up my prayers and positive energy to you, your courageous wife and your children. May your suffering be eased and may you all find peace in your hearts. Your trials seem insurmountable, but try to keep going, putting one foot in front of the other moving forward. You sound like a magnificent man and a great family. I offer you this quote, hoping it gives you some comfort. I don't know who the author is:

    Courage isn't always a loud roar.

    Sometimes courage is a quiet voice at the end of the day that says,

    "I will try again tomorrow."

    Hugs, Renee

    Thomas
    My heart breaks for your wife, you, and the children. As I was praying this morning for your wife I realized I didn't know her name. What is your dear wifes name?
    Take care
    Jennifer
  • marines911
    marines911 Member Posts: 68
    #31
    ms.sunshine said:

    Thomas
    My heart breaks for your wife, you, and the children. As I was praying this morning for your wife I realized I didn't know her name. What is your dear wifes name?
    Take care
    Jennifer

    Wife's name
    is Lesley

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