My daughter has a brain tumor,,,,

My daughter was diagnosed 7 years ago, 11/18/05, to be exact, with an Oligodenroglioma. This has been a terrible journey, with its ups and downs, and now the worst thing of all I think, the loss of my daughter, as far as communication, having a decent conversation etc. It seems like I have lost her already, as I cannot seem to be able to talk with her in any kind of manner. She is full of anger, directing a lot of that anger towards me, not reasonable at all, and this is breaking my heart. Has any one else out there experienced this, or are experiencing the changes mood, personality etc. I am so grateful to God that I still have her, but I really don't have her as she was.

Sincerely,
hope624

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hope624,
My tumor(an astrocytoma) has definitely affected my moods and personality.I find myself getting aggitated easier and my moods are all over the place,crying very easily.My husband says he wants the "old" me back.I have been told the location of my tumor and the meds that I am on have alot to do with my emotions.I,too, have been through a long journey,7 years it will be in March (since I was diagnosed).
Amanda

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Dear: Hope624 yes, I had the same experience; my daughter had it 1999 it was terrible journey at the time there was not alot of support and it was diffcult for her in school kids bully her and calling her different names she had no friends when she developed this disease. I was shock I my daughter was being treated like a freak even some adults would not let there children play with my little girl. I went to see my daughter at lunch time and she was sitted all by herself I would have never know this if it was for my friend saw her at lunch time because she did not confided in me about it. They face lots of different changelles in there life and it can be diffculties if there is no support we need to hang in there an help them and reach out. It is not easy so you have to try to reach her and talk to her and find out whats going on even if it hurts the lord give you strength. My daughter and I we have made it with anger, tears, laughter and sadness just try to listen and feel her pain and you get some kind of support for you and her. Unfortuately no one care and I try to find somewhere to fit in for me and my daughter; it has been a long struggle but we found a support group so far it is fantsatic so if you can find a support group for you and daughter. I wish you all the strengh and hang in there.

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Amanda, I will pray for you, and my daughter, and I know in my heart that she does not mean what she says. I know that she loves me to pieces. It is hard at times though to be the person she seems to hate. I cry a lot, try to be positive, and not be depressed around my daughter, and that is sooooooo hard. I ask God all of the time, why not me? I have lived a life, but I have gotten no answer to that one. Please be patient when your husband says he wants the old you back, so do I with my daughter, however, I know that both of us feel so blessed to have the two of you still with us.I despise Cancer, will always depise Cancer, and pray that someday there will be a cure.

On the lighter side, she gave me a little sign that says "I know that God never gives me more that I can handle, but sometimes, I just wish He didn't trust me so much." Makes me smile when I read it.

Bless you, and my daughter, Amanda.
Hope624

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Dear seaweed, children can be so cruel, and yes, adults can be cruel. My family makes no effort to understand this disease, to learn more about this disease, and have the nerve to complain when my daughter says, or does, something erratic, which is more often now. So who am I am able to talk with in this small family of mine? They seem to think that it will all go away, it will not.And, as much as I love them, sometimes I would love to slap them one by one.

We do go to a support group, unfortunately, they are moving farther away. I am a night blind driver, now I fear the ice and snow more than ever, and it is going to be hard getting there.HOWEVER, I must find a way to do that. I have seen a counselor also, there I can cry, kick, do whatever I chose, and that is good, I have not seen him for about 3 months now, but am making a New Years resolution to get back there as fast as possible. Even when I talk to the few friends I have, they try to help me, they cannot, as they could never totally understand what any of us are going through, both the patient, and the mother/father/family of the patient.

Bless you seaweed, bless your daugher, and mine.

Hope624

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Hi Hope624, I have the oligodendroglima since 1998 ( 39 yrs), & anaplasia oligo. in 2008. I will pray for you & your daughter.
I don't remember all the things I went thru. My daughter was 12 back then. But now we get along. You have to trust yourself
& just hope thinks will be alright. My heart goes out to you. Just be patient.
Give her a hug, AnnJoy

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Good morning, hope624 I hope you had a beautiful Chirstmas and I wish you and your daughter a Happy New Year! I do not know where you live but some places help you get to support groups but if not hang in there and hang on too your faith. I am not going to lie to you; it is a hard journey and it will take alot of patience and understanding.

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AnnJoy, Bless you and your daughter also. It is so darned hard. My daughter has her up days, and she goes and goes. Then for all of the good days she has, she is in bed for the next several days. I understand why, but it is so hard to see. She is in bed today, and all of yesterday. She even cancelled one of her doctors appointments. Her pain doctor where I take her every 3 months, and it is so hard get appointments. I am trying to be more positive, and upbeat, and I do give her lots of hugs and kisses, even though at times, I could really scream, I just do not.

Take care, have a blessed New Year.

Hope624

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Good morning Seaweed, my Christmas was good, I was with both of my children, and grandchildren, and even my great-grandson. So all was well. I just thank God daily that my daughter is still with us, and have such hopes that she will be next Christmas.

Have a blessed New Year, talk soon.

Hope624

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I understand also my husband was originally diagnosed with a ganglioglioma in April 2011 and in May 2012 an Anaplastic Astrocytoma. Since his second surgery and after radiation and chemo he is a different person. He before was a very loving kind person and now is hateful, moody, irrational and selfish. This may sound horrible for me to say these things about my husband but I still love him and I know he can't help it. I wish it was me a lot I've been through the entire journey with him and I was 5 months pregnant when he was diagnosed with AA and it is so hard sometimes to deal with his childish behaviors as well as a 3 month old. I mention the behaviors to his oncologist and I am constantly worrying that this means he is hurting and not telling me or that the tumor is progressing. When I mention it to the ON he tells my husband to nicer and my husband denies it I don't think he does it on purpose I really don't think he realizes he is doing it. Then I feel bad because the ON says he thinks I feel like I need to be in control of the situation but its our lives and I just want to have the best quality as possible. But I feel selfish for feeling this way I'm sorry I just needed to vent. God will see us through.

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Dear CCatron, I understand your feelings totally. This is day 3 that my daughter has been in bed. I talked with her briefly this am, she was mean, and nasty to me also. It hurts like heck, but I do try to remember that this is not my daughter talking, but that darned tumor. The doctors removed a golf size portion last year, but of course, could not get to the feet that the tumor has, that is still growing into her brain. She does not share much with me any longer, but I know that the is terrified each and every day that this will be her "last" day. I am at my wits end, but am trying to cope as best I can. I love her so very much, but at times, I cannot go there to see her because I never know how she will be, lashing out, or nice?Do to feel selfish my dear, I don't. This is a terribly hard journey for the patient, and for the caregiver/wife/mother whomever. Yes, I am praying that God will see us through.Keep the faith dear, keep the faith.

Hope624

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I took my daughter to her Oncologist yesterday for her MRI, and to see the Dr. He said there is a thickening or the scar tissue/or/there could be some growth. We have to wait 2 more months to go back, and I am so very sick about this. I don't want to fear the worst, however, this sounds so bad.I asked him why not one month, and he said that he will be able to tell more in two months. Oh this terrible, hurtful, heartbreaking journey. I don't know how these doctors can even think that it is possible to worry oneself sick in that length of time. I am not going to be negative, going to be positive, and pray.

Sincerely,

hope624

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I know it is so hard to not worry yourself to death in this situation. As a mother I can't imagine what your going through. Always remember that God has good plans for us things that will glorify him. I pray God blesses you and your family. You will be in my prayers.

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Thank you so much for your prayers. I saw Tami today, she was acting like she does not have a care in the world, all for me I am sure. Her husband told me that she is worried sick, and how can anyone blame. Bless her heart. God keep her in your loving care, and please Lord give her a lot longer to be with those that love her so much.

Hope 624

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My son was just diagnosed with an astrocytoma located between his optical nerves in Sept. Where is yours located at? I have noticed that he seems to have less patience and gets mad easier then before and not sure if is tumor related, the fact that he is 13, or he is just plain tired of me asking him how he is feeling all the time.

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Momofseth,
My tumor is located in my left frontal lobe.The tumor probably plays a big role in your sons emotions.I know it did mine I don't have as much patience as I used to and I find get aggravated much more easier.Before the tumor I wasn't like that but I find myself crying over the least little thing.But it must be very hard to go thru this at 13 ,feel free to ask anymore questions or just to talk. Amanda

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Dear Hope:

I alos had an Oligo, resection in June 2011. Her moods can be affected by a number of different factors. First is the location of the tumor itself, secondly the type of treatment she had ( radiation chemo ) and thirdly medication she is on. Steroids affect people differently, I know when I was on them I was nasty, mean, irrational.

Hang in there.

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