Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 I am really sorry to hear all of this Donna. From one Mother to another, I know it just tears your heart out when your child suffers. I can't believe it has been a whole year since last summer and all of our problems with Lee, but he is doing great now and is looking forward to starting 11th grade. I do believe sometimes that children are STRONGER than we are. I will keep your family in my prayers... Donna H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Donna, I am so sorry to read of your family's challenges. Wow. You have a double whammy with and , not to mention Fred. God must give you strength. I am worn out from just Anne's challenges. We are facing dilemmas too right now. I pray for the right decisions for us and your children. I know you'll keep us posted. Hugs, Vicki, also staying afloat despite the odds. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 thx for the update Donna. Hope Fred is doing well as you did not mention him. This is so stressful for us adults, really feel for the kids. education and understanding as much as possible will go a long way in helping with the fear. prayer not hurt either :-) I hope your kids can continue with their daily lives and not let worries getbest of them, hang in their mom. cindy In NF2_Crew@y..., hmschoolma@a... wrote: > Hi Crewbies, > From time to time I give you guys updates on our family. I think this is > important because we tend to keep an eye on each other and sometimes > treatment decisions are made based on how someone else's treatment turned > out. > Many of you know that we took and to HEI in December of 2000 > for surgeries. had her left VS decompressed in an attempt to > stabilize her rapidly declining hearing in that ear. She is already deaf in > the right ear from surgery at the age of 10. Her hearing was successfully > stabilized from then until now. This Saturday (the 10th) and > both had audiology testing done. Her hearing is declining again. So, the > surgery may have bought her a year and a half of stabilization but what was > the cost? I am not talking $ here. 's recent MRI reports show many > new tumors. Many. The MRI reports we have recently received are direct > reports from the scans, not comparisons to previous scans because JUH's MRI > department lost the scans we left for comparison. It may be when they > compare (they recently found the scans we left) they may say that the tumors > aren't new or haven't grown. If that happens, a little miniature version of > me will pop out of your computer screen and dance joyfully on your keyboard! > I read all of the MRI reports as they come, though, and as much as I might > hope for it, barring a miracle it isn't going to happen. > 's ABR showed an improvement post-op. It now shows a significant > increase in the delay. This is also on the side of his surgery. ('s > surgery was a removal of the left VS as well as a facial nerve tumor.) His > MRI reports also show increases in the number of tumors seen and what I > believe will be increases in size when the actual comparisons are done. I > hope I'm very wrong about this in both cases. > We're keeping it together, but as usual we have the NF2 dilemma. To treat > or not to treat (and where did it get us last time?) who, what, when, where, > why, and how? English class is dismissed. Health & Science class bring your > sleeping bags. > Thanks for all your support through another time of figuring out what the > next step should be. Thank you for the prayers that I know will be said for > our family. We appreciate all of you Crewbies more than you know. Please be > patient if you email. I am forever swamped by email and life and at times > like this all of that seems to increase exponentially. If I don't answer > fast, I'm not ignoring anyone. I'm swimming against the current right now. > God is still in His heaven-though for a moment or two I forgot that. And > He is not shocked or surprised by any of this. Not a bit. Our trust is in > Him for guidance, wisdom, comfort, and anything else we will need on this > part of the journey. > I'll let you know when we make decisions but don't expect any of those to > be quick. All the angles have to be considered. > I know many of you are facing MUCH tougher stuff with your own children or > other loved ones or with your own health decisions. Know that when I read of > it I do pray for you even if I don't always email to tell you so. We are all > in this together after all. > God bless. > > ...Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 This is odd I cant find the post Getz News with the original info on it :-( Can someone forward it to me PLEASE M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Donna, I will pray for your family and continue to pray for all, like you said, we are all in this together and it is an enormous help to be able to share our burdens with others on the crew. I wish I could help you with your decisions, but, truthfully, I don't know what I would do at this time either. Would trying a tumor reducing drug help at this point.? Just a thought. God Bless! Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 I don't know what to say; the only thing I can think is that if your kids were to end up with the usual Nf problems despite your best efforts, you can at least know that you and Fred have been the best possible role models. You have shown that life can be lived, enjoyed even when NF is Part of your Life--as you said, it is PART of your life, but NF is NOT your life. Fred has shown you can find someone to love you/share your life with; support a family, have a career; absolutely it has been tough, but he has shown it can be done. And you have shown you can deal with all the problems on your plate, and still be able to show the world a smile. Like they say, don't pray for an easy life, pray to have the strength to deal with the life you have. Much love to the Getz family, they may have NF, but they also have each other. Love, marie Getz News Hi Crewbies, From time to time I give you guys updates on our family. I think this is important because we tend to keep an eye on each other and sometimes treatment decisions are made based on how someone else's treatment turned out. Many of you know that we took and to HEI in December of 2000 for surgeries. had her left VS decompressed in an attempt to stabilize her rapidly declining hearing in that ear. She is already deaf in the right ear from surgery at the age of 10. Her hearing was successfully stabilized from then until now. This Saturday (the 10th) and both had audiology testing done. Her hearing is declining again. So, the surgery may have bought her a year and a half of stabilization but what was the cost? I am not talking $ here. 's recent MRI reports show many new tumors. Many. The MRI reports we have recently received are direct reports from the scans, not comparisons to previous scans because JUH's MRI department lost the scans we left for comparison. It may be when they compare (they recently found the scans we left) they may say that the tumors aren't new or haven't grown. If that happens, a little miniature version of me will pop out of your computer screen and dance joyfully on your keyboard! I read all of the MRI reports as they come, though, and as much as I might hope for it, barring a miracle it isn't going to happen. 's ABR showed an improvement post-op. It now shows a significant increase in the delay. This is also on the side of his surgery. ('s surgery was a removal of the left VS as well as a facial nerve tumor.) His MRI reports also show increases in the number of tumors seen and what I believe will be increases in size when the actual comparisons are done. I hope I'm very wrong about this in both cases. We're keeping it together, but as usual we have the NF2 dilemma. To treat or not to treat (and where did it get us last time?) who, what, when, where, why, and how? English class is dismissed. Health & Science class bring your sleeping bags. Thanks for all your support through another time of figuring out what the next step should be. Thank you for the prayers that I know will be said for our family. We appreciate all of you Crewbies more than you know. Please be patient if you email. I am forever swamped by email and life and at times like this all of that seems to increase exponentially. If I don't answer fast, I'm not ignoring anyone. I'm swimming against the current right now. God is still in His heaven-though for a moment or two I forgot that. And He is not shocked or surprised by any of this. Not a bit. Our trust is in Him for guidance, wisdom, comfort, and anything else we will need on this part of the journey. I'll let you know when we make decisions but don't expect any of those to be quick. All the angles have to be considered. I know many of you are facing MUCH tougher stuff with your own children or other loved ones or with your own health decisions. Know that when I read of it I do pray for you even if I don't always email to tell you so. We are all in this together after all. God bless. ...Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Marie, Such eloquence for Donna and the Getz family. I can't say it any better. What a family and what a woman is Donna!! Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Hi Donna, We haven't chatted in a while, but I wanted to let you know I saw this post (I'm one of the crewbie lurkers...) You know we will be thinking of you and praying for you all ......decision making time again I suppose......like there is ever a time when it isn't.... We are ok , has been keeping fairly well since he had GK last summer. His one gold weight was working its way out so had to be removed. It hasn't been replaced yet so he is wearing goggles at night now to protect his eyes. No other real changes. I promise I will send a long chatty email soon. Preeti Getz News Hi Crewbies, From time to time I give you guys updates on our family. I think this is important because we tend to keep an eye on each other and sometimes treatment decisions are made based on how someone else's treatment turned out. Many of you know that we took and to HEI in December of 2000 for surgeries. had her left VS decompressed in an attempt to stabilize her rapidly declining hearing in that ear. She is already deaf in the right ear from surgery at the age of 10. Her hearing was successfully stabilized from then until now. This Saturday (the 10th) and both had audiology testing done. Her hearing is declining again. So, the surgery may have bought her a year and a half of stabilization but what was the cost? I am not talking $ here. 's recent MRI reports show many new tumors. Many. The MRI reports we have recently received are direct reports from the scans, not comparisons to previous scans because JUH's MRI department lost the scans we left for comparison. It may be when they compare (they recently found the scans we left) they may say that the tumors aren't new or haven't grown. If that happens, a littl 's ABR showed an improvement post-op. It now shows a significant increase in the delay. This is also on the side of his surgery. ('s surgery was a removal of the left VS as well as a facial nerve tumor.) His MRI reports also show increases in the number of tumors seen and what I believe will be increases in size when the actual comparisons are done. I hope I'm very wrong about this in both cases. We're keeping it together, but as usual we have the NF2 dilemma. To treat or not to treat (and where did it get us last time?) who, what, when, where, why, and how? English class is dismissed. Health & Science class bring your sleeping bags. Thanks for all your support through another time of figuring out what the next step should be. Thank you for the prayers that I know will be said for our family. We appreciate all of you Crewbies more than you know. Please be patient if you email. I am forever swamped by email and life and at times like this all of that seems to increase exponentially. If I don't answer fast, I'm not ignoring anyone. I'm swimming against the current right now. God is still in His heaven-though for a moment or two I forgot that. And He is not shocked or surprised by any of this. Not a bit. Our trust is in Him for guidance, wisdom, comfort, and anything else we will need on this part of the journey. I'll let you know when we make decisions but don't expect any of those to be quick. All the angles have to be considered. I know many of you are facing MUCH tougher stuff with your own children or other loved ones or with your own health decisions. Know that when I read of it I do pray for you even if I don't always email to tell you so. We are all in this together after all. God bless. ...Donna Quote Link to comment Share on other sites More sharing options...
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