Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Congradulations Donna...we are all looked after in one way or another!! Bless you!!! Hugs, Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 It's always nice to have a happy mom around! It sounds like they're taking nice care of you guys, Donna. Thanks for sharing your good news!!! Hugs and Healing Thoughts, donnahut@... wrote: > Hi na, > > Lee could not use his phone in Houston, and belive it or not I am on the Neurosurgeon's computer!! I will also email this to the Crew so you don't have to... We got WONDERFUL news!! Well, considering what I thought we would hear, this is wonderful news. Lee's brainstem tumor is OK, the NS said he would just watch it. What he was concerned about were Lee's ANs. They have grown considereably, the one on the left is 2.8cm and the one on the right is 2cm. We are going to have IMRT radiation on these tumors, and it lasts for 4 to 6 weeks. Dr. Mccutcheon also said that they will discuss treating his brainstem tumor also. We will find out WHEN we do this tomorrow, but right now we have a caseworker trying to find us a place to stay. This is all outpatient, so we will be staying in Houston for that long. > > I was so nervous that I turned all splotchy from my nerves, but I am really HAPPY now!! > > See ya! > Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Great News Donna, i am so glad it wasn't as bad as you were expecting, big hugs for all of you, yeah i guess even for my mate :-) >From: donnahut@... >Reply-To: NF2_Crew >To: jfinch@... >CC: NF2_Crew >Subject: GOOD NEWS!!!!!!!! >Date: Tue, 12 Nov 2002 14:53:30 -0500 > >Hi na, > >Lee could not use his phone in Houston, and belive it or not I am on the Neurosurgeon's computer!! I will also email this to the Crew so you don't have to... We got WONDERFUL news!! Well, considering what I thought we would hear, this is wonderful news. Lee's brainstem tumor is OK, the NS said he would just watch it. What he was concerned about were Lee's ANs. They have grown considereably, the one on the left is 2.8cm and the one on the right is 2cm. We are going to have IMRT radiation on these tumors, and it lasts for 4 to 6 weeks. Dr. Mccutcheon also said that they will discuss treating his brainstem tumor also. We will find out WHEN we do this tomorrow, but right now we have a caseworker trying to find us a place to stay. This is all outpatient, so we will be staying in Houston for that long. > >I was so nervous that I turned all splotchy from my nerves, but I am really HAPPY now!! > >See ya! >Donna > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 SO HAPPY YOU GOT SOME GOOD NEWS DONNA LEE IS A FIGHTER AND I BELIEVE ALL THE PRAYERS ARE BEING ANSWERED MY THOUGHTS AND PRAYERS ARE WITH YOU A BIG HUG CATHERINE GOOD NEWS!!!!!!!! > Hi na, > > Lee could not use his phone in Houston, and belive it or not I am on the Neurosurgeon's computer!! I will also email this to the Crew so you don't have to... We got WONDERFUL news!! Well, considering what I thought we would hear, this is wonderful news. Lee's brainstem tumor is OK, the NS said he would just watch it. What he was concerned about were Lee's ANs. They have grown considereably, the one on the left is 2.8cm and the one on the right is 2cm. We are going to have IMRT radiation on these tumors, and it lasts for 4 to 6 weeks. Dr. Mccutcheon also said that they will discuss treating his brainstem tumor also. We will find out WHEN we do this tomorrow, but right now we have a caseworker trying to find us a place to stay. This is all outpatient, so we will be staying in Houston for that long. > > I was so nervous that I turned all splotchy from my nerves, but I am really HAPPY now!! > > See ya! > Donna > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Donna, & Lee What wonderful news. Congratulations Donna. NF2 people are amazing. What would make most people crumble and here you are jumping for joy!. Best wishes as the procedures are carried out. Regards ine from OZ GOOD NEWS!!!!!!!! > Hi na, > > Lee could not use his phone in HoustonWe got WONDERFUL news!! Well, considering what I thought we would hear, this is wonderful news Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Donna, Great news! Let us know about the brainstem tumor. We're so happy for you. Sandy Re: GOOD NEWS!!!!!!!! SO HAPPY YOU GOT SOME GOOD NEWS DONNA LEE IS A FIGHTER AND I BELIEVE ALL THE PRAYERS ARE BEING ANSWERED MY THOUGHTS AND PRAYERS ARE WITH YOU A BIG HUG CATHERINE GOOD NEWS!!!!!!!! > Hi na, > > Lee could not use his phone in Houston, and belive it or not I am on the Neurosurgeon's computer!! I will also email this to the Crew so you don't have to... We got WONDERFUL news!! Well, considering what I thought we would hear, this is wonderful news. Lee's brainstem tumor is OK, the NS said he would just watch it. What he was concerned about were Lee's ANs. They have grown considereably, the one on the left is 2.8cm and the one on the right is 2cm. We are going to have IMRT radiation on these tumors, and it lasts for 4 to 6 weeks. Dr. Mccutcheon also said that they will discuss treating his brainstem tumor also. We will find out WHEN we do this tomorrow, but right now we have a caseworker trying to find us a place to stay. This is all outpatient, so we will be staying in Houston for that long. > > I was so nervous that I turned all splotchy from my nerves, but I am really HAPPY now!! > > See ya! > Donna > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 Sandy, They ARE going to treat his brainstem tumor also. He met with the radiologist today, Dr. Chang, and he believes they will be able to treat this tumor as well. We have a whole day of tests tomorrow, ending in MRI's at 9:00p.m., and I will know more then. I have MORE good news though. Lee had his hearing tested today, and his hearing is at 100%!! He has not had it tested since these tumors have grown so much, so I was VERY nervous about this. Dr. Chang said that radiation is not 100% a sure thing, which we all know, but he did say that if he lost his hearing it would be GRADUAL. You ask me, that is a heck of a lot better than surgery and sudden loss, with all the hardships of surgery. Still in Houston... Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2002 Report Share Posted November 13, 2002 They are treating the brainstem tumor with radiation D? I'll be honest I've never heard of that. I sure wish there was a sure to save his hearing since his eye sight is so affected. let me ask you this, he cant be totally blind, is he? does he wear glasses? Is he able to see to read his books for schoool, large print, ? just trying to understand whay challenges he has. donnahut@... wrote: > Sandy, > > They ARE going to treat his brainstem tumor also. He met with the radiologist today, Dr. Chang, and he believes they will be able to treat this tumor as well. We have a whole day of tests tomorrow, ending in MRI's at 9:00p.m., and I will know more then. I have MORE good news though. Lee had his hearing tested today, and his hearing is at 100%!! He has not had it tested since these tumors have grown so much, so I was VERY nervous about this. Dr. Chang said that radiation is not 100% a sure thing, which we all know, but he did say that if he lost his hearing it would be GRADUAL. You ask me, that is a heck of a lot better than surgery and sudden loss, with all the hardships of surgery. > > Still in Houston... > Donna > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2002 Report Share Posted November 14, 2002 Subject: Re: GOOD NEWS!!!!!!!! Hi Cindy, my Glioma was Cancer and in the brainstem, just above the medullary junction of the brainstem and spinal cord. It was surgically treated, then radiated the 1st time. Radiation is quite often used to treat brainstem tumors I'm told, as a preference for very life threatening tumors. In cancer situations of course because of chemo and the barrier that exists, radiation is used. Surgery is too much vitally important in an area involving too many things basically. So again radiation would be used in that situation. I wonder if they will try to use the 3 prong method to treat this, as was used for me, in feb 1988. Both AN's and the brainstem tumor were done at the same time, exactly, as if one tumor. As we know, some types of radiation can only be used in location once, making it necessary to do the 3 tumors, and as they are so close to the tumors in some cases that the thinking is that what is another portion within an inch to get another tumor, but I still question this thinking as we have a lot that can be damaged in that inch. Fractionated was used in my case, with a 6 cm radius damaged for each tumor. I'm hoping they use a different type of rad for him for this reason, hopefully more focused. I also hope they aren't toying with doing 3 at once as they did in my case. Although there as little pain in doing this, very minimal compared to surgery. In fact non really, a little burning at the edge of the mask. Also I do still have hearing on one side, and am still alive and doing quite well I think. I think Gamma would have been a better choice in this instance, if it had been available. Just a tough decision to make. I wish the best for Donna, Lee and . Sheryn rambling.......... ______________________________ _________________________ > They are treating the brainstem tumor with radiation D? I'll be honest I've never heard of that. I sure wish there was a sure to save his hearing since his eye sight is so affected. let me ask you this, he cant be totally blind, is he? does he wear glasses? Is he able to see to read his books for schoool, large print, ? just trying to understand whay challenges he has. > > donnahut@... wrote: > > > Sandy, > > > > They ARE going to treat his brainstem tumor also. He met with the radiologist today, Dr. Chang, and he believes they will be able to treat this tumor as well. We have a whole day of tests tomorrow, ending in MRI's at 9:00p.m., and I will know more then. I have MORE good news though. Lee had his hearing tested today, and his hearing is at 100%!! He has not had it tested since these tumors have grown so much, so I was VERY nervous about this. Dr. Chang said that radiation is not 100% a sure thing, which we all know, but he did say that if he lost his hearing it would be GRADUAL. You ask me, that is a heck of a lot better than surgery and sudden loss, with all the hardships of surgery. > > > > Still in Houston... > > Donna > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2002 Report Share Posted November 15, 2002 Yes, they are treating his brainstem tumor with radiation. This is the VERY best bet we have of saving his hearing Cindy. If we can stop these tumors from growing any more, then he will not loose any. Glasses only help him a little bit, but he is not totally blind. In fact, unless you saw him trying to read something or playing his electronic games, you would not KNOW this kid is visually impaired. I am very proud of him. The school has provided him with a bunch of gadgets to help him, magnifiers, but he usually just reads real close to the book. I have to go talk to the school next week. We will start our first IMRT treatment next Thursday and it will last for 6 weeks, so I am going to see if he can get tutored by the certified teacher at the Mc House during this time. I am on my way HOME for 6 days now! Donna In a message dated 11/13/2002 7:53:50 PM Eastern Standard Time, cinnyd@... writes: > > > They are treating the brainstem tumor with radiation D? I'll be honest I've never heard of that. I sure wish there was a sure to save his hearing since his eye sight is so affected. let me ask you this, he cant be totally blind, is he? does he wear glasses? Is he able to see to read his books for schoool, large print, ? just trying to understand whay challenges he has. > > donnahut@... wrote: > > > Sandy, > > > > They ARE going to treat his brainstem tumor also. He met with the radiologist today, Dr. Chang, and he believes they will be able to treat this tumor as well. We have a whole day of tests tomorrow, ending in MRI's at 9:00p.m., and I will know more then. I have MORE good news though. Lee had his hearing tested today, and his hearing is at 100%!! He has not had it tested since these tumors have grown so much, so I was VERY nervous about this. Dr. Chang said that radiation is not 100% a sure thing, which we all know, but he did say that if he lost his hearing it would be GRADUAL. You ask me, that is a heck of a lot better than surgery and sudden loss, with all the hardships of surgery. > > > > Still in Houston... > > Donna > > > > Quote Link to comment Share on other sites More sharing options...
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