momsworld

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sadinholland
sadinholland CSN Member Posts: 248
in Brain Cancer #1
I have been thinking about and praying for you and your daughter. I pray she is doing better.
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  • alutiiqmom
    alutiiqmom Member Posts: 256
    #2
    Momsworld
    Good Morning:
    I too have been thinking of Momsworld and her daughter. We have been praying for her healing and for comfort of he mother. I send you God's blessing today.
    Edna
  • cindysuetoyou
    cindysuetoyou CSN Member Posts: 513
    #3
    me too
    I have had momsworld and her daughter on my heart too. Wondering how they both are doing, praying that her daughter is recovering and praying for strength and peace for momsworld.....
  • PBJ Austin
    PBJ Austin CSN Member Posts: 347 Member
    #4
    cindysuetoyou said:

    me too
    I have had momsworld and her daughter on my heart too. Wondering how they both are doing, praying that her daughter is recovering and praying for strength and peace for momsworld.....

    This worries me
    It always scares me when we don't hear from people in a while. Momsworld, if you are out there please drop us a line. We know you are busy and we understand why you have been away but we all hope your little girl is OK. And we hope you are OK too.
  • momsworld
    momsworld CSN Member Posts: 135
    #5
    PBJ Austin said:

    This worries me
    It always scares me when we don't hear from people in a while. Momsworld, if you are out there please drop us a line. We know you are busy and we understand why you have been away but we all hope your little girl is OK. And we hope you are OK too.

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~
  • mighty6
    mighty6 CSN Member Posts: 47
    #6
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    a chinese Dr. in Florida -- my last resort
    Tina,

    It's heartbreaking to hear about your daughter. As a mother myself, I know words can not describe how you feel right now...
    You probably know what's best for her. But in case you still want to try.I have one more Dr. who I always want to check out when things are not working well for my hubby (hope we never need to).

    http://www.ratemds.com/doctor-ratings/25501/Hai-Sha-Ni-Merritt-Island-FL.html

    A friend's friend's daughter was on the same boat as yours. The parents did not believe any nonstandard way of treatments, but Drs. from MD Anderson gave up eventually. Out of desperation, they want to Dr. Ni early this year. All I know is the little girl is back to school and stable for almost a year by now. The cost for the treatments/herbs are around ~$500/month.

    The only catch is this Dr. insists the patient to be off any type of western treatments. Up till today, we are still not sure if we have that guts yet. So we never tried ourselves.

    I heard this from somewhere and like it:
    We are all in God's waiting room. Just don't know when we will be called.

    Please hug your beautiful daughter. She smiles like a angle.

    - Jane
  • Devman
    Devman Member Posts: 5
    #7
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    So Sorry..
    Momsworld,
    My heart breaks for you and for all us. My 22-year-old son was diagnosed with a GBM grade 4 last October 2010. We live MRI to MRI and hope to stay away from the Hospital for more than 6 months at a time. There is no cure for brain tumors at some point and time it will take their life it's just a matter of when, that I come to realize is true.
    Our Children should never go to heaven before us! Enjoy every moment with your daughter. I pray for "time" for you. Enjoy your vacation..

    Julie
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #8
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    So sorry
    Hi Tina:

    I am so sorry to read your post. I hope and pray that you enjoy every minute with her. Enjoy Atlantis. I am sorry that I do not have words to express my sorrow for you, but I do have the gift of prayer and I will be praying for you and your daughter this evening. Enjoy her at home. God Bless you and yours.

    Edna
  • 4theloveofmysis
    4theloveofmysis CSN Member Posts: 248
    #9
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    momsworld
    My prayers are with you and your daughter. There is nothing that I can say to make this any better so I wont even try. I hate this cancer and what it has done to all of our lifes. I hope that the chemo can slow it down...And that your dream vacation is wonderful.
  • connsteele
    connsteele CSN Member Posts: 232
    #10
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    Prayers for your daughter and you too
    I am so sorry to hear about your daughter's setback. Both you and she are real fighters and have given everything you can to fight this terrible illness. I know it seems so dark now, but don't give up hope. Sometimes things seem the darkest before the light, whatever form that light takes. I pray for peace for you and your daughter and also that you have a wonderful time on vacation.

    Connie
    Mom of son, age 34, dx 4-13-11, inoperable AA3
  • PBJ Austin
    PBJ Austin CSN Member Posts: 347 Member
    #11
    connsteele said:

    Prayers for your daughter and you too
    I am so sorry to hear about your daughter's setback. Both you and she are real fighters and have given everything you can to fight this terrible illness. I know it seems so dark now, but don't give up hope. Sometimes things seem the darkest before the light, whatever form that light takes. I pray for peace for you and your daughter and also that you have a wonderful time on vacation.

    Connie
    Mom of son, age 34, dx 4-13-11, inoperable AA3

    To our dear momsworld
    I feel speechless, I am so very sorry to hear this news and I wish I could say or do more to help. My heart breaks for you and I wish I could walk through cyberspace and give you a hug right now. Your story about your daughter seeing the other boy is quite moving. Please do enjoy your dream trip to Atlantis and make some precious memories to last a lifetime. We are still here for you and always will be, and I will continue to keep you and your baby in my thoughts and prayers.

    With love,

    Pam
  • sadinholland
    sadinholland CSN Member Posts: 248
    #12
    PBJ Austin said:

    To our dear momsworld
    I feel speechless, I am so very sorry to hear this news and I wish I could say or do more to help. My heart breaks for you and I wish I could walk through cyberspace and give you a hug right now. Your story about your daughter seeing the other boy is quite moving. Please do enjoy your dream trip to Atlantis and make some precious memories to last a lifetime. We are still here for you and always will be, and I will continue to keep you and your baby in my thoughts and prayers.

    With love,

    Pam

    Hello Momsworld,
    It saddens me to hear what your daughter is going through. I am still praying for her as well as you and thinking about you guys every day! God Bless!!
  • chicken2799
    chicken2799 Member Posts: 105
    #13
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    So very sorry to hear your news!
    I too wish I could give you a hug! I really hope she enjoys her vacation! You have been in my thoughts and prayers, and I will continue to send prayers your way! Enjoy every minute of that vacation with your precious Angel!
  • cindysuetoyou
    cindysuetoyou CSN Member Posts: 513
    #14
    momsworld said:

    Hi everyone,
    well, this has been such a rollercoaster ride for us. Unfortunetly I got the news that I have been dreading to hear. I was told that there will be no cure for my daughter. Her tumor was dx as a malignant nueronal tumor. One of her nurses left her notes in the hosp room and I peeked at it and her notes said AA7. The bleeding in her brain has done some damage to her vision and her balance. She was in the hosp for 2wks and 1 day and then transfered to an inpatient facility near our home. She has been there for 5 days today and I have decided to take her home. I will be bringing her home today. I am feeling pretty numb right. This almost doesn't seem real. Her doctors did not give us any length of time. They told me that they cannot because the tumor is very unpredictable. I have decided to put her back on Etoposide to hopefully slow down the tumor growth and give her a little more time. I want her to recover from all this and try to get things back to normal as much as we can for her. I have also decided to take her on her dream vaca. Atlantis her we come. I haven't told her anything about her prognosis yet. I am not sure that I will either. I don't know. The first 2 days after her surgery she was unconcious and when she woke up, she told me that she saw this boy that we know. He passed away about a month ago of the same thing. Well, I met his mom but we never actually met him and my daughter described him to me and when I looked at his picture later on, she was right on. She said that he was peaceful. She said that it was all so peaceful. I feel like I am rambling on and on. I will update soon. thank you for all of your thoughts and prayers.
    ~Tina~

    Dear momsworld,
    I am so very
    Dear momsworld,

    I am so very sorry to hear all this about your little girl. I read this a few days ago but could not bring myself to post and still can't think of anything meaningful or comforting to say to you. I'm praying for peace and strength for you, and an extra measure of grace for you to face the hard days ahead.

    We had planned an Alaskan cruise with a bunch of my family this last summer, and right before we were supposed to go, David started having those seizures and then we found out that he had a recurrence of his tumor. My extended family all chipped in and paid for David to go with us on that cruise. I will cherish those memories for the rest of my life. Even though we had gotten rotten news, we were still able to have some really good, really special times. ( We had to work at it a lot.) I hope that your trip with your daughter is really good and special for you both too.

    I'm praying for you...with all my love and compassion....
    Cindy in Salem, OR
  • momsworld
    momsworld CSN Member Posts: 135
    #15
    cindysuetoyou said:

    Dear momsworld,
    I am so very
    Dear momsworld,

    I am so very sorry to hear all this about your little girl. I read this a few days ago but could not bring myself to post and still can't think of anything meaningful or comforting to say to you. I'm praying for peace and strength for you, and an extra measure of grace for you to face the hard days ahead.

    We had planned an Alaskan cruise with a bunch of my family this last summer, and right before we were supposed to go, David started having those seizures and then we found out that he had a recurrence of his tumor. My extended family all chipped in and paid for David to go with us on that cruise. I will cherish those memories for the rest of my life. Even though we had gotten rotten news, we were still able to have some really good, really special times. ( We had to work at it a lot.) I hope that your trip with your daughter is really good and special for you both too.

    I'm praying for you...with all my love and compassion....
    Cindy in Salem, OR

    Thanks all of you
    It is comforting to know that you are all here for my daughter and I. I met with her doctors yesterday and we all decided that my daughter will take a low dose of etoposide to hopefully slow down the tumor growth. I also mentioned to the docs about my plans for a vaca in early May with her, and he suggested that we might want to plan it earlier than that. That broke my heart, She will never turn 15, this will be her last christmas. My heart hurts so bad. I just love her so much. :(:(
  • cindysuetoyou
    cindysuetoyou CSN Member Posts: 513
    #16
    momsworld said:

    Thanks all of you
    It is comforting to know that you are all here for my daughter and I. I met with her doctors yesterday and we all decided that my daughter will take a low dose of etoposide to hopefully slow down the tumor growth. I also mentioned to the docs about my plans for a vaca in early May with her, and he suggested that we might want to plan it earlier than that. That broke my heart, She will never turn 15, this will be her last christmas. My heart hurts so bad. I just love her so much. :(:(

    It's a quarter to five here
    It's a quarter to five here in Oregon and I've been lying here for a while, unable to sleep. I read this and am weeping for you and you daughter. It is so hard.
  • I_Promise
    I_Promise CSN Member Posts: 218 Member
    #17
    cindysuetoyou said:

    It's a quarter to five here
    It's a quarter to five here in Oregon and I've been lying here for a while, unable to sleep. I read this and am weeping for you and you daughter. It is so hard.

    your beautiful daughter
    I don't want this to be true. It is not fair. Some realities are just too painful . I send all my love to you and to your daughter.
  • 4theloveofmysis
    4theloveofmysis CSN Member Posts: 248
    #18
    momsworld said:

    Thanks all of you
    It is comforting to know that you are all here for my daughter and I. I met with her doctors yesterday and we all decided that my daughter will take a low dose of etoposide to hopefully slow down the tumor growth. I also mentioned to the docs about my plans for a vaca in early May with her, and he suggested that we might want to plan it earlier than that. That broke my heart, She will never turn 15, this will be her last christmas. My heart hurts so bad. I just love her so much. :(:(

    momsworld
    Im so sorry, my heart goes out to you...
  • chicken2799
    chicken2799 Member Posts: 105
    #19
    momsworld said:

    Thanks all of you
    It is comforting to know that you are all here for my daughter and I. I met with her doctors yesterday and we all decided that my daughter will take a low dose of etoposide to hopefully slow down the tumor growth. I also mentioned to the docs about my plans for a vaca in early May with her, and he suggested that we might want to plan it earlier than that. That broke my heart, She will never turn 15, this will be her last christmas. My heart hurts so bad. I just love her so much. :(:(

    So Sorry
    My heart is breaking for you! I am at my desk crying my eyes out because it does not seem fair. I know everything happens for a reason, and we are not suppose to question God. It is hard to keep that faith! Take her on that trip and enjoy every second, because it will be the memories that you get to make together that will help keep you and her strong! You are in my prayers!
  • AshleyWF
    AshleyWF CSN Member Posts: 46
    #20
    momsworld said:

    Thanks all of you
    It is comforting to know that you are all here for my daughter and I. I met with her doctors yesterday and we all decided that my daughter will take a low dose of etoposide to hopefully slow down the tumor growth. I also mentioned to the docs about my plans for a vaca in early May with her, and he suggested that we might want to plan it earlier than that. That broke my heart, She will never turn 15, this will be her last christmas. My heart hurts so bad. I just love her so much. :(:(

    Prayers
    This is not the news any of us had been praying for. Bad news is never welcomed or convenient.
    Have patients with your slow healing heart. Allow yourself to feel instead of remaining numb. May the lord show you his tender mercies, strength and peace in the days ahead. May he surround you and your daughter with the love and comfort of family and friends.
    We are all thinking of you.

    Ashley
  • PBJ Austin
    PBJ Austin CSN Member Posts: 347 Member
    #21
    AshleyWF said:

    Prayers
    This is not the news any of us had been praying for. Bad news is never welcomed or convenient.
    Have patients with your slow healing heart. Allow yourself to feel instead of remaining numb. May the lord show you his tender mercies, strength and peace in the days ahead. May he surround you and your daughter with the love and comfort of family and friends.
    We are all thinking of you.

    Ashley

    :-((
    It's been a long time since I had a good cry over something I read on a message board. I feel like this child has gone through cancer with my kid sis and I really hate what is happening. You have always said my words comfort you and now I feel powerless to do that anymore. All I can offer is the prayer we say in our family during difficult times.

    May the Lord bless you, keep you, make His face to shine upon you and give you peace.

    Pam

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