I'll try to see if I can do this: I am sure you all know that my daughter had this very rare thing in her brain stem, pons and cerebellum. How can I tell you this?? It's not a tumor or cancer but her own blood vessels bleeding out into her gray matter. Well, we kept her alive for 25 years but in the end she had that very large bleed in her mid brain and left her almost a veggie. They did get her off the breathing machine after 3 months so I could take her home. She lived for under 3 years after that. She couldn't hear swallow or eat, laugh, cry, use her arms or legs, had no balance, and the list goes on and on. She finally died at 41 in bed one night. It had been a horrible 25 years both for us and for her. She was such a soft, quite, polite, sweet thing, I can't still believe she was taken from this world. She could have done such wonderful things here if she had been allowed to. So that brings me to my sister, my only blood relative left on this earth. She hadn't been feeling well since March 1st. She had all the same, but milder, symptoms that my daughter had. Turns out she may have a mass in the same area that my daughter had her problem. Now a "mass" is not the same thing as what my daughter had but "it sure hits home for me". It is bringing up all the heartbreaking hours that I felt over all those years. I know I have to stay strong for my sister but I am here to tell you that this is going to be hard... It's probably nothing and she probably will be perfect afterwords but she will have surgery on Friday morning or afternoon. A number of years ago she had 8 blood clots in her lungs which they dissolved and now have her on cumidin, sp?. Now they had to get that out of her blood in order to do the surgery. They also tested her all day looking for cancer somewhere else in her body and looking for more blood clots in her legs. Never in a million years did I think that my very own and only sister would be in the almost same situation that my special daughter was in. Life, sometimes, is just not fair. Trying to be STRONG but I really find that HARD to do. Thanks for listening to my problems, my dear friends. Trying not to be to tearful, Barb
OH Barb, what a story and what a life you must have had! I really had no idea people actually have problems. We know each other as avatars, and a few messages, which doesn't bring people much closer! I wish I was there to give you a hug!
Barb in a situation like this it's so hard to know just what to say. I'm going to hope with all my heart that your sister's operation on Friday finds nothing too difficult for the surgeons to deal with. It's going to be a tough few days for you until she's out of theatre but I know you'll get through it somehow. Whenever you feel up to it please let us know how your sister is doing.
Thank you all, my friends. I am not talking about this with real life people, at least, until after this weekend, so your kind words are certainly welcome to my heart. Living with, death at our door, has become a way of life for me. It has been hard but, I have worked long hours for all these years. That kept my thoughts from running wild. stratsmom and KK Ng, thank you for your kind thoughts and prayers. calinromania and to all of you. I don't think of you all as avatars. I think of you as an extended family. I have learned soo much from all of you and try to learn all about your gardens and flowers. It gives me joy. I like that feeling in my heart. eileen, My sister is very optimistic about this surgery on Friday. She really isn't aware of all the dangers. She thinks that all theses deficits that she has right now will be all gone after they take this thing out on Friday. Well, I know that these deficits may be permanent. Loss of balance, loss of taste, some strength in her arm, and slurred speech may stay with her and after Friday she may have more and they may be difficult to overcome at her age. She doesn't have a clue. The doctor has not told her anything. I think he will talk more to her today sometime. That way she won't worry so long, I guess. She actually thinks she is going to be released from the hospital on Saturday evening and will be living in her own home, or her boyfriends for a day. Then she thinks she will be able to drive and live her life as usual.... If that's what gets her through this week to day of surgery but our mother thought us to be more realistic about these things. I hope things do turn out the way she is thinking but you do know what brain surgeons say???? "Touch a brain, never the same." My daughter had 2 brain surgeries that lasted 14 hours each time. She also had the gamma knife about 4 times totaling about 8 hours. I know that saying is almost always very very true, especially, when they fool around with the cerebellum and pons. Needless to say I am worried sick. Thank you all very much. I do feel you are part of my friendship circle.
What to say, except you are so very special, and certainly your sister is, too. Hoping and praying for you both.
Oh Barb, it is a tough situation to be in. Hope things will turn out better for your sister after the surgery. Your family is in our thoughts and prayers. Take care!
Hi Barb, I am overwhelmed. I knew your daughter had died after a long illness, but I had no idea of the reality of it. I am so so sorry. I understand your worries about brain surgery. It must be so tough to know the possible realities and your sister does not. That sounds heart breaking. Any possibility that she does know deep down but is not ready to look at it? After all, she is your daughter's aunt, right? She has seen a similar illness up close. I hope you are able to hold on to what you can actually do, pray, and b-r-e-a-t-h-e. I will be thinking of you & your sister on Friday.
For all of you to know: The pons is what makes you breath and makes your heart beat. My sister didn't really know exactly what or where my daughter had. It is so hard to fathom. Actually for those in the know, my daughter had an brain stem AVM about 6 centimeters. It covered the cerebellum and went to the top of the brain stem. My hubby STATED, "If she has what my Lil Debbie had, you are going for a brain scan next week." WOW he never talks that strongly. I am sure all of you have had such hardships and I know time does really heal all but at this time, for me, I am in crisis at the moment. Thank you my friends.
Barb, You are in my thoughts and prayers! What else can I say? our words can't give any guarantee of the best outcome, but we certainly will hold you up in prayer. Stay strong, keep up your faith.
