Post by phylscircus2 on Jun 13, 2008 21:33:18 GMT -6
;D Introducing myself. I am Phyllis, mom to a spinal cord tumor survivor of nine years.......and he is 9 years old now 
His tumor is so pathologically a mess, its tagged a GBM/AOA. The two worst and majority share holders in the tumor they removed in January 2000. C-2 ALLLLL the way the rest of the spinal cord. His spine was fused at the time of resection....no plates or pins. His vertebre was attempted to be saved but since 5 are gone completely. He has scoliosis due to one leg shorter then the other, but it seems growth is not so much a problem from radiation. They believe he will make it to his 6'2 expectations.
Pretty much a confused grey matter tumor that not only had no idea where the brain was....but chose the spinal cord to grow. Yes, he calls it his stupid tumor and he has proof, he claims "my tumor was soooo dumb.....it grew in the wrong spot. It didn't know where it was supposed to be, so it decided to pick my back......its not so bad having a tumor be dumb.....it thought chemo was a drink and radiation was sun bathing so it soaked it all up." He has a great sense of humor and wrote that in a "Tell me about yourself..." to his teacher in 2nd grade. Being the mom, I enjoy his thrust for life. I also think about it often.
Knowing he has a different approach in that manner.....it is not often 'controlling him'. He has weaknesses down the right side, numbness he very rarely discusses only monitored by tests. He thinks its cool he sweats on only the one side of his body....he achieved no more ankle and leg braces after much hard work and 3 years of working on it. He wanted to be normal. He did surgery 1/2000, approx. 95% resection,did 18 months of chemo 2/2000-7/2001, on day three of radiation it poof disappeared....it was still alive the week earlier when they were placing his tattoo dots, followed by complete radiation max dose in 11/2001. He is tumor free almost 10 years technically. He is the reason I will never complain about pain. My son Zachery is amazing.....and it is amazing his diagnoses it what it is. Almost ten years later he has shocked many of the people who met him when he was pretty close to death be this walking, talking vibrent little man. Don't think he doesn't show the kids when they wear fake tats on their arms his real ones. He is NOT shy by any means. I wouldn't change a thing and I do not tolorate anyone telling me he shouldn't be so open. He is proud of himself regardless of someone elses opinion....its the problem with kids these days and self esteem and the bullies....he knows how to handle the mean kids......unfortunately, even AFTER explaining to children on the bus, he was not wearing shin guards but braces to help him walk......it was not a good idea to let them think they were just as sturdy.....OUCH! 3 sets, $1800.00 a leg......yep, it hurt me more..... ;D Don't let this introduction fool you.....we walk on pins and needles every year at MRI time. Only between scheduling and actually going and getting my copy to go home and look at it myself. It's hard to find a support group for his make-up, his really is not supposed to be there...I have read ALOT of what each of the patients on this list have as side effects and he is really no different. It all I guess has to go with location.....and I really hope you all the best wishes and definate prayers for a cure no matter the diagnoses or what a pathology report call it.
Thank you for letting my yap.....Phyllis
His tumor is so pathologically a mess, its tagged a GBM/AOA. The two worst and majority share holders in the tumor they removed in January 2000. C-2 ALLLLL the way the rest of the spinal cord. His spine was fused at the time of resection....no plates or pins. His vertebre was attempted to be saved but since 5 are gone completely. He has scoliosis due to one leg shorter then the other, but it seems growth is not so much a problem from radiation. They believe he will make it to his 6'2 expectations. Pretty much a confused grey matter tumor that not only had no idea where the brain was....but chose the spinal cord to grow. Yes, he calls it his stupid tumor and he has proof, he claims "my tumor was soooo dumb.....it grew in the wrong spot. It didn't know where it was supposed to be, so it decided to pick my back......its not so bad having a tumor be dumb.....it thought chemo was a drink and radiation was sun bathing so it soaked it all up." He has a great sense of humor and wrote that in a "Tell me about yourself..." to his teacher in 2nd grade. Being the mom, I enjoy his thrust for life. I also think about it often.
Knowing he has a different approach in that manner.....it is not often 'controlling him'. He has weaknesses down the right side, numbness he very rarely discusses only monitored by tests. He thinks its cool he sweats on only the one side of his body....he achieved no more ankle and leg braces after much hard work and 3 years of working on it. He wanted to be normal. He did surgery 1/2000, approx. 95% resection,did 18 months of chemo 2/2000-7/2001, on day three of radiation it poof disappeared....it was still alive the week earlier when they were placing his tattoo dots, followed by complete radiation max dose in 11/2001. He is tumor free almost 10 years technically. He is the reason I will never complain about pain. My son Zachery is amazing.....and it is amazing his diagnoses it what it is. Almost ten years later he has shocked many of the people who met him when he was pretty close to death be this walking, talking vibrent little man. Don't think he doesn't show the kids when they wear fake tats on their arms his real ones. He is NOT shy by any means. I wouldn't change a thing and I do not tolorate anyone telling me he shouldn't be so open. He is proud of himself regardless of someone elses opinion....its the problem with kids these days and self esteem and the bullies....he knows how to handle the mean kids......unfortunately, even AFTER explaining to children on the bus, he was not wearing shin guards but braces to help him walk......it was not a good idea to let them think they were just as sturdy.....OUCH! 3 sets, $1800.00 a leg......yep, it hurt me more..... ;D Don't let this introduction fool you.....we walk on pins and needles every year at MRI time. Only between scheduling and actually going and getting my copy to go home and look at it myself. It's hard to find a support group for his make-up, his really is not supposed to be there...I have read ALOT of what each of the patients on this list have as side effects and he is really no different. It all I guess has to go with location.....and I really hope you all the best wishes and definate prayers for a cure no matter the diagnoses or what a pathology report call it. Thank you for letting my yap.....Phyllis
