update from momworld

momsworld
momsworld Member Posts: 135
Hi,
I know that it has been awhile since I have been on and that is because my daughter has taken a turn for the worse. She had another brain hemorrhage the week before the 4th of July. Surgery was done to stop the bleed and thats when the docs discovered that the tumor went from a quater size to the size of a mans fist, in just 3 months, on Etoposide. So after a very long discussion with her team and I, the decision was made that there will be no more surgeries and due to the growth rate and sensitivity to bleeding, they do not give her very long. I made them give me a number(which they never would before) of how long she has and they finally said, mathmatically of course, 3 months or less. They think more on the less side though. Our goal now is to make sure she has no pain. She is home now and hospice is involved. We will see how the rest of this journey goes. My daughter is strong and a fighter. She has surprised the doctors before. I am trying to take it day by day,but man is it hard. Anyway, I don't have alot of time to post but I will keep you all updated.
Sorry to deliver the bad news but you guys have been my rock for 2 1/2 years and I really need you now

Comments

  • sonfollower
    sonfollower Member Posts: 26
    Momsworld
    I am so sorry to hear about your daughter. You are in our prayers right now for comfort and understanding.
    This monster is so aweful.
    Thank you so much for the courage to share this new. Unfortunately, this news all part of the disease.
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    momsworld
    You are and will always be in my prayers. We are all on here to support you, as close by your side and we can be. Take care, I wish I could give you a hug..
    Brenda
  • Beckymarie
    Beckymarie Member Posts: 357
    Momsworld
    My thoughts and prayers for your daughter and family. I hope you can find some peace in this painful process.
    Becky
  • PBJ Austin
    PBJ Austin Member Posts: 347

    Momsworld
    My thoughts and prayers for your daughter and family. I hope you can find some peace in this painful process.
    Becky

    You are always in my thoughts
    Warm hugs, thoughts, prayers, peace and comfort to your family during this difficult time. We will always be here for you.
  • connsteele
    connsteele Member Posts: 232
    I am so sorry to hear of the
    I am so sorry to hear of the recent downward turn of your daughter. I know how tough it is. I look back on when we were in the same situation and wonder how we did it, but we did. Please take comfort in knowing that you and your daughter have shared a special bond that can never be broken, in this life or the next. As the hospice chaplain told us a week before our son passed, "you are walking on sacred ground."

    Since his passing I have struggled with why he had to go through all he did. I have found comfort in the song from the musical "Rent." It helps me to realize that even though his last year was tough, it had value and purpose, for both him and us. Here are the words:

    Five hundred twenty-five thousand
    Six hundred minutes,
    Five hundred twenty-five thousand
    Moments so dear.
    Five hundred twenty-five thousand
    Six hundred minutes
    How do you measure, measure a year?

    In daylights, in sunsets, in midnights
    In cups of coffee
    In inches, in miles, in laughter, in strife.

    In five hundred twenty-five thousand
    Six hundred minutes
    How do you measure
    A year in the life?

    How about love?
    How about love?
    How about love? Measure in love

    Seasons of love. Seasons of love

    Five hundred twenty-five thousand
    Six hundred minutes!
    Five hundred twenty-five thousand
    Journeys to plan.

    Five hundred twenty-five thousand
    Six hundred minutes
    How do you measure the life
    Of a woman or a man?

    In truths that she learned,
    Or in times that he cried.
    In bridges he burned,
    Or the way that she died.

    It's time now to sing out,
    Tho' the story never ends
    Let's celebrate
    Remember a year in the life of friends
    Remember the love!
    Remember the love!
    Seasons of love!

    Oh you got to got to
    Remember the love!
    You know that love is a gift from up above
    Share love, give love spread love
    Measure measure your life in love.

    The video link is:


    Love, prayers, and hugs,
    Connie
    m/o David
    dx medulloblastoma 1985, age 8
    26 years remission
    dx AA3 April 2011
    passed April 14, 2012
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    I'm so sorry
    Dear Momsworld,

    I'm so sorry to hear that your daughter is struggling. She has fought so hard and so valiantly. I'm so in awe of how such a young person can be so brave in the face of a foe like cancer. She really is amazing.

    My son is also a fighter. He is losing the battle though. He had a brain bleed too, while doing Avastin, so he won't be getting Avastin any more. We are very sad because he had good results while doing Avastin. But the treatments took a terrible toll on him. He could still do chemo, but I don't know if he could survive the treatment. I don't know if our NO will authorize any more treatments.

    I also pressed for details about a month ago, and our NO tentatively gave David 4 to 6 months. They said its difficult to predict, and he could die sooner from a brain bleed, stroke, blood clot, infection, etc. So we are trying to cherish each moment and live one day at a time. It's extremely difficult--I'm sure that I don't need to tell you how hard it is.

    I think of you often and I will continue to pray for you and your little girl. Stay strong! (I tell myself that several times a day. Our kids need us to be strong. Now is not the time to falter or waver in our strength or our faith.)

    Love and blessings,
    Cindy
  • alutiiqmom
    alutiiqmom Member Posts: 256
    Sorry Tina
    Hi Tina:
    I am very sorry to read your post. My heart hurts for you and I am at a loss of words. Enjoy every minute with your daughter, which I know you do anyway. You are an amazing Mom - providing continuous love and care for you daughter and that is always which she needs. I sometimes get so feeled with fear on this illness that I do not check this site as often. I do not know Sarah's journey. What I do know is I cling to my faith and I will continue to for the rest of my life. I will pray for you and your daughter. I pray for all on this site. God Bless you Tina. You are in my thoughts and prayers.

    Edna
  • danishguy40
    danishguy40 Member Posts: 3
    dear moms world i am new to
    dear moms world i am new to this site but i want to send you my prayers. so sorry to hear about your daughter. if you care to talk i am always here. again i will light a candle and have my church say a prayer for you and your family
  • I_Promise
    I_Promise Member Posts: 218 Member

    dear moms world i am new to
    dear moms world i am new to this site but i want to send you my prayers. so sorry to hear about your daughter. if you care to talk i am always here. again i will light a candle and have my church say a prayer for you and your family

    I send you all my love
    Your daughter is an inspiration for us all. Thank you for sharing. I will be thinking of her.

    xoxo

    J.
  • chicken2799
    chicken2799 Member Posts: 105
    Momsworld
    I am so very sorry to hear this news. All of us are here for you. Your daughter is blessed to have such a devoted Mom! My God bring you strength during this time, and give you comfort. As always you will be in my prayers.

    Michelle
    Mobile, Al
    DX: 10/20/09 AA3
  • lben
    lben Member Posts: 2

    Momsworld
    I am so very sorry to hear this news. All of us are here for you. Your daughter is blessed to have such a devoted Mom! My God bring you strength during this time, and give you comfort. As always you will be in my prayers.

    Michelle
    Mobile, Al
    DX: 10/20/09 AA3

    Update on momsworld
    Heaven has another angel to watch over us. Love you so much, Gramma B
  • chicken2799
    chicken2799 Member Posts: 105
    lben said:

    Update on momsworld
    Heaven has another angel to watch over us. Love you so much, Gramma B

    Update on Momsworld
    Please ler Momsworld know that my prayers are with her and the family!!!

    Michelle
    Mobile, Al
  • sadinholland
    sadinholland Member Posts: 248

    Update on Momsworld
    Please ler Momsworld know that my prayers are with her and the family!!!

    Michelle
    Mobile, Al

    My prayers are with her and
    My prayers are with her and her family as well!
  • alutiiqmom
    alutiiqmom Member Posts: 256
    lben said:

    Update on momsworld
    Heaven has another angel to watch over us. Love you so much, Gramma B

    sorry
    Hi Tina:

    I am so sorry to read the latest post. My prayers and thoughts are with you. Your daughter will always be with you - she is a part of you. There is no breaking the bond between Mother and child.
    Philippians 4:14 "I have strength for all things in Christ Who empowers me." I will pray for your peace and comfort during this most difficult time.

    Love, Edna