Please, God, help me be strong until the end

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Comments

  • ketziah35
    ketziah35 Member Posts: 1,145
    #22
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    Sending prayers
    I am sending prayers your way!

    Ketz
  • chicken2799
    chicken2799 Member Posts: 105
    #23
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    Cindy
    You and David are always in my thoughts and prayers. I too wish that I lived closer so that I could help in anyway possible. All of you on here seem like family, and I cry with you when I read your posts. This is an awful disease, but in the end if we don't beat it we will be in the best place ever! I would want my family to be as persistent as you have been even if it ever gets to where I am unable to respond or make my own decisions. I admire you for all the decisions you have made that you felt were right. Never second guess yourself because I know you are doing all of this out of a Mother's Love for her Son! God Bless you with peace and comfort through this time.

    Michelle
    Mobile, Al
    DX: 10/20/09 AA3
  • sadinholland
    sadinholland Member Posts: 248
    #24
    chicken2799 said:

    Cindy
    You and David are always in my thoughts and prayers. I too wish that I lived closer so that I could help in anyway possible. All of you on here seem like family, and I cry with you when I read your posts. This is an awful disease, but in the end if we don't beat it we will be in the best place ever! I would want my family to be as persistent as you have been even if it ever gets to where I am unable to respond or make my own decisions. I admire you for all the decisions you have made that you felt were right. Never second guess yourself because I know you are doing all of this out of a Mother's Love for her Son! God Bless you with peace and comfort through this time.

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

    Remember the Serenity Prayer. Not a day goes by that I don't think of you and David. God Bless! I am praying for you guys....
  • alutiiqmom
    alutiiqmom Member Posts: 256
    #25
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    prayers and love for you Cindy
    Hi Cindy:

    I think of you and your son David all of the time. You are a wonderful, loving Mother. Whatever you chose to do for David will be the right one for him at the right time. My heart is hurting for you. I will be praying for your family's peace and for David's as well. God Bless you all Cindy.

    Love, Edna
  • I_Promise
    I_Promise Member Posts: 218 Member
    #26
    alutiiqmom said:

    prayers and love for you Cindy
    Hi Cindy:

    I think of you and your son David all of the time. You are a wonderful, loving Mother. Whatever you chose to do for David will be the right one for him at the right time. My heart is hurting for you. I will be praying for your family's peace and for David's as well. God Bless you all Cindy.

    Love, Edna

    Lots of Love
    I am sending you lots of love. Thank you for sharing. I always check if there are any news. You have done an amazing job of taking care of David. He could not be more love and more taken care of.

    J.
  • Unknown
    Unknown
    #27
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    My heart is there with you
    Cindy,

    Thank you for keeping us updated, especially when you have so many things to do right now. I just wanted you to know that you have impacted and are impacting many people's lives for good, as you love and serve David so fiercely and faithfully. I think each of us longs to be loved like that - so completely and totally, and you are such a good example of someone who loves with your whole heart - it's a blessing to each of us to be able to share in that love to a small degree.

    I think of you and David constantly, and my heart aches for you - I wish we could be there to help you, but I'm thankful that your family is there for you as well. Sending much love and virtual hugs during this extremely tender time for you. CindyO
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #28
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    Cindy
    You are am amazing mother... Im so glad your family is there for you. You have been so supportive for so many of us on here. Thank you. I wish there was something that I could do for you. Prayers for you.
    Brenda
  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #29
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    Cindy
    You are an amazing mother... Im so glad your family is there for you. You have been so supportive for so many of us on here. Thank you. I wish there was something that I could do for you. Prayers for you.
    Brenda
  • akellyd
    akellyd Member Posts: 2
    #30
    David
    Hi Cindy,
    In googling this great world web about the type of tumor I was just diagnosed with I popped up with many listings of your replies. I am so sorry to hear about your sons passing. Oddly enough it sounds like we were on a very similar timeline. I was first diagnosed with a PXA tumor that had a successful resection in June of 2009 and didn't have one blip of change up until a routine MRI this November where regrowth of an anaplastic oligodendroglioma was discovered. I had had no symptoms the second time, and went into surgery expecting that it was the same thing I think. Don't really think I expected this sudden downfall of Grade III, or oddly enough that this could be fatal in a few years. Pretty sick of hearing doctors tell me they "Hope treatment is curative"
    Apparently the two tumors are somehow related, I believe 'sister tumors' is how my oncologist described it. It was not expected anything would regrow, or even suggested after the first successful surgery that a different tumor could pop up. I had my second surgery a week ago and they think they got it all, and now all the appointments are piling up as radiation is planned and we wait for deletion status and so forth to hear whether or not chemo will be included. Had David had a different type of tumor prior to this one?
    Guess I just wanted to say thank you for sharing your sons story on the web. Certainly touching and I wish it could have ended differently. If you could pass along any resources that might be helpful for me I would be appreciative, I am working with the neuro team at Kaiser in Redwood City, CA but have been trying to find as much research as possible on the stuff.
    Feel free to e-mail me at Lexidavella@yahoo.com, would love to get a little more in depth if you are available (fully understand if you aren't)

    Thanks,
    Lexi
  • Cliff21060
    Cliff21060 Member Posts: 2
    #31
    cindysuetoyou said:

    thank you to everyone
    Thank you, everyone, for your comments and support. I am barely hanging on by a thread and your notes to me here on csn really make a difference. It's amazing to me how people I've never met have become so important to me and have been such a source of support and help to me. I hope God blesses you for your kindness to me.

    I tried giving David 2 oz of formula via his tube. He had such violent diarrhea, and many episodes of diarrhea. I don't understand where it's coming from. I called hospice, called the palliative care dr, even called our old home health care nurse that we had before we made the switch to hospice. They all think that David's digestive system is failing and he is passing the water thru his gut and it's coming out from his bowels instead of processing it through his kidneys or something like that. The dr said that David's body is producing bile and other stuff and that's what makes the diarrhea have that color....a dark greenish black. I hope I'm not being too graphic...please forgive me if I am.

    The other night, I cleaned David up at midnight and went to bed. Then I woke up and checked David, and he had to be changed. This was at 4 am. At 6 am, I bolted awake and checked him again...had to clean him up again. Then again at 8 am. I felt so desperate. It runs everywhere, from the small of his back all the way down to his knees. It's like black inky water. I'm cleaning him up by myself because my husband works graveyards. I keep thinking it can't get harder, I can't be sadder, and then it gets worse.

    So I am not giving David any formula. I do believe what the palliative care dr said about it causing David to die faster...that he will actually burn more calories digesting the formula than he actually takes in. She said it's just a matter of time now. It all depends on his body's "machine"....how much does he have stored to run his body's machine before he totally runs out. No way of knowing, but since he's young, it could be several weeks. I guess you can live off water (and a ton of pills) for quite a while.

    In the meantime, David doesn't look connected and aware of what is going on very much any more. He has periods of apparent clarity but they only last a few seconds. He looks so bad. His eyes don't match...one eye looks one way, the other eye looks off a different direction. It is so upsetting to me! He makes chomping motions with his mouth...really rhythmic. I don't know if he's trying to talk or if it's a mini seizure. He used to look at me when I talked to him and he would track me with his eyes. He rarely does that any more. I wonder if he's dehydrated but the dr said to cut back on water and see if it helps the diarrhea but so far it hasn't helped and I don't like holding off on the water, so I am going to start increasing it again. He is still having diarrhea with less water so why not give him more?

    Today Portland State University called to check on David's student status. I thought i was okay but I ended up having a total meltdown on the phone with a complete stranger. He was very kind and sympathetic and I told him about David coming home from the hospital after having brain surgery and being so sick and weak but he tried on a new jacket and was so pleased and said he was going to wear it on the first day of class. He never was able to go back to school, and when we moved him out of his apartment, there was that jacket hanging up in his bedroom. It made me cry my head off back then, and I cried my head off when I told that guy on the phone today. I've been a wreck all day today, crying off and on and not being able to get on top of things.

    My family has really rallied around me and has been so supportive. I think they are worried that I might crash and burn. I notice that they are coming over a lot and they seem to be making sure that I'm never alone. My niece comes over all the time and grocery shops with me, runs errands with me, helps me clean and reposition David, does housework. My sister spends the afternoons and evenings with me. My daughters and my other son come over every day. We all eat dinner together and we sit around and talk a lot. They all got together and fixed up my house...painted the entire interior, finished putting in our laminate flooring, new molding, switched out all the outlets and light switches, put up new light fixtures, redid my bathrooms.....just totally fixed up our house. It hasn't looked this good since we moved in 18 years ago. I took pictures and showed David and he seemed interested. That was last week though....

    Julia, I have really mixed feelings about a PEG. I don't know if it was the right choice for David. I'm such a neophyte with all of this medical stuff. I didn't know what we were getting into with having a PEG put in. But I guess if I was going to do it all over again, I would probably do a PEG again. I felt like I needed a way to give pain meds and other medicines, and to keep David hydrated. I just didn't know about all the other implications that are involved with a PEG. It's been a real nightmare....

    Thank you again, everyone, for your posts. I am so grateful.
    Love and blessings, always,
    Cindy

    Cindy
    You sound like a strong lady my prayers go out to you.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #32
    akellyd said:

    David
    Hi Cindy,
    In googling this great world web about the type of tumor I was just diagnosed with I popped up with many listings of your replies. I am so sorry to hear about your sons passing. Oddly enough it sounds like we were on a very similar timeline. I was first diagnosed with a PXA tumor that had a successful resection in June of 2009 and didn't have one blip of change up until a routine MRI this November where regrowth of an anaplastic oligodendroglioma was discovered. I had had no symptoms the second time, and went into surgery expecting that it was the same thing I think. Don't really think I expected this sudden downfall of Grade III, or oddly enough that this could be fatal in a few years. Pretty sick of hearing doctors tell me they "Hope treatment is curative"
    Apparently the two tumors are somehow related, I believe 'sister tumors' is how my oncologist described it. It was not expected anything would regrow, or even suggested after the first successful surgery that a different tumor could pop up. I had my second surgery a week ago and they think they got it all, and now all the appointments are piling up as radiation is planned and we wait for deletion status and so forth to hear whether or not chemo will be included. Had David had a different type of tumor prior to this one?
    Guess I just wanted to say thank you for sharing your sons story on the web. Certainly touching and I wish it could have ended differently. If you could pass along any resources that might be helpful for me I would be appreciative, I am working with the neuro team at Kaiser in Redwood City, CA but have been trying to find as much research as possible on the stuff.
    Feel free to e-mail me at Lexidavella@yahoo.com, would love to get a little more in depth if you are available (fully understand if you aren't)

    Thanks,
    Lexi

    hello
    Hi, Lexi.

    I would be happy to do anything or tell you about any resources that might possibly help you. I would feel glad if something we had experienced could be a help to you or to anyone who is battling brain cancer. Please feel free to ask me any questions that you want.

    David only had anaplastic oligodendrogliomas. The first time, they said they removed 100% of all the visible tumor but they made it clear that there were microscopic cells left that had the potential to develop into tumors. David's MRIs were clear for two years, and then in July 2011 he had two grand mal seizures and that's when they found "disease progression." They removed approx 90% of the second (anaplastic oligodendroglioma) tumor.

    I don't think it's really common to develop another type of tumor but I have read of it happening several times here on csn. And I read on one of David's last MRIs that they found mixed tumor type cells...oligoastocytoma or possibly GBM. It was near the end and I did not want to see the MRI and I didn't even fully read the MRI report. I just couldn't bear to read that his tumors had progressed and had possibly changed to an even more dangerous form.

    I will share a few things from our experience (our little pool-"puddle"--of wisdom) that you may already know....I hope it will help.

    It's good that you were able to have two surgeries and have the tumor removed. The more they can get out, the better.

    Radiation was hard---it made David very tired and weak--but he recovered and afterwards, you would never have even guessed that he'd been sick for even a day. He also took Temodar during radiation and afterwards. Temodar made David terribly constipated, tired, and he had "chemo brain"--short term memory loss mostly--but it was manageable. He took Ritalin when he took Temodar and it helped him to remember and keep focused. He worked part time for Apple, went to college (university level) lived alone, worked out at the gym, rode his mountain bike, played basketball, golfed, and hung out with friends and family. In short, went back to his regular life. He tired easier, but in the overall scope of things, not a big deal at all. This was after radiation and while he was doing Temodar. During radiation, he lived with us and he took it easy...he didn't do much for the last two weeks of radiation and for several weeks after radiation.

    We sought out two more opinions after the original diagnosis and treatment plan. Our oncologist had said that he recommended chemo and radiation because David did not have the gene deletions. The second doctor said to do just radiation or just temodar in case of a recurrence. If we only used one treatment, we could use the other one if/when David had a recurrence. The third opinion agreed with the first doctor. David had said from day one that he wanted to fight as hard and as aggressively as possible, right from the start, so he did both treatments. I felt it was the right choice. I think it gave him two cancer-free, good years.

    Here are two websites that can help you find clinical trials:

    http://www.clinicaltrials.gov

    http://www.cancer.gov/clinicaltrials/search

    We went to NIH (National Institutes of Health) in Maryland. The clinical that David tried did not help him. But NIH was wonderful. They are super organized and have everything all together. They paid for all of our flights and got subsidized hotel rates for us. They arranged for bus and taxi transportation and even gave us each a $15 a day food allowance. I so wish that their clinical trial would have bought more time for David but it was not to be, I guess.

    Our doctor at Oregon Health Sciences University pioneered a treatment protocol called the "Blood Brain Barrier Program." I think it's a little controversial. Our insurance would not approve it...they said it was a clinical. Finally after we had been to NIH and came back, Medicare agreed to the BBB. The treatment was too much for David...the side effects were brutal...but it drastically reduced the tumor mass. You can see the before and after pictures of his MRIs in my "expressions area here on csn. David had to discontinue the BBB because he developed blood clots, abcesses, blood infections, e-coli, heart block, and had several severe seizures. He never regained enough ground to tolerate another BBB treatment. He only had two. I just met a woman at a cancer support group who did the BBB 17 years ago for a tumor on her pineal gland and on her spine. She was able to do all 12 treatments. (one year's worth) She hasn't had any brain tumors since. However, she said she now has colon cancer from the radiation that they did on her spine. But she looks good, is living independently, and has only a few other after-effects from her battle with the pineal tumor. I would be thrilled beyond words if David had done as well.

    Our oncologist at OHSU is Dr. Edward Neuwelt and the protocol is called the Blood Brain Barrier Program. Here's their website:

    http://www.ohsu.edu/xd/research/centers-institutes/neurology/blood-brain-barrier//

    I hope that these few notes may give you a couple more options to explore. Please let me know if you have any questions. I'd love to be of any help that I can be.

    You may want to start a new thread here on csn and ask about clinical trials and treatment protocols that others have used for anaplastic oligodendrogliomas. Having a thread that is dedicated to asking for help with trails and protocols may provide some ideas from other posters on csn.

    Please keep us updated on your treatment and progress. I especially would like to know about whether or not you have the deletions, and how radiation goes for you.

    Love and blessings and healing to you,
    Cindy in Salem, OR

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