Tuesday, February 18, 2020
Sudden development...
Shannon felt it necessary to let everyone know one of her fingers she cannot close fully and it twitches open if she thinks about it. To keep a sense of suspense I will not tell you which one. But should you see her, she's not trying to be rude, it's just how it is.
Monday, February 17, 2020
Seven doctors walk into a bar . . .
(Many thanks to my incredible husband for typing, lettering, driving, etc. Please contact him to contact me . . . my finally round of brain has made it literally impossible to read/writing/talking skills are headed off to bite the dust - Shannon)
Things are not good for Shannon right now. Over the past two months she's had to quit teaching (the Texas school system is a nightmare to begin with), cannot drive, and her memory is becoming sketchy. Perhaps the worst part is her ability to communicate is being affected. She cannot read, write, type, or speak clearly. Most of the time she can understand words spoken but its about 90% right now. She`ll not be able to read or write this blog.
Last Monday we met with our first doctor to try to assist with her cognitive issues, November she was able to teach, January she couldn't reliably form a sentence. A regime of vitamins and supplements were added. I noticed a small improvement, mostly in her memory, but her speaking became better as well.
Early Wednesday we met with a small heard of doctors, assistants and others. We had an MRI done, followed by labs, then finally the consultation. One of the doctors-in-training did neurological tests upon Shannon, including testing her ability to speak, read, and move her limbs. Despite doing better than she had been, in my opinion, she started to have a mental breakdown during the exercises. I think she had been denying her condition to herself, but after failing so publicly, without me being able to cover for her it hit her.
The MRI results are bad, we didn't take a picture, but not only is it growing in new areas, there are little spots that are also growing away from the primary tumors. The one growing in her language center has slowed, but it is again greatly displacing her brains shape. The doctors at that meeting were less than optimistic, their best seemed to be do radiation and take pills. Neither of which have had a track record of great success. The one good thing that did come from that consultation was getting Shannon on steroids to reduce swelling. That has improved both her cognitive functions as well as her ability to read and write. She was able to write the first paragraph with only some help. Lastly they recommended seeing another doctor for radiation assessments.
Friday we met with the radiologist, the doctor did recommend a course of radiation, it has been several years. I have my doubts, they didn't seem to do much before, and this would be a significantly less powerful version. We also wanted to speak with a surgeon, the tumor on the MRI seems predominately on the outer side of the brain.
Later Friday we saw a surgeon who was, to our surprise, not on the autism/Asperger scale. She was very nice, friendly and empathetic. She also did not recommend surgery as the first option. I was a bit disappointed, I had hoped that they could do some testing to see how much her left side is actually doing, and see if a large scale removal would be possible. Neither are, not without very significant risk. She did however suggest that after radiation, they would see if any areas are still growing, and if possible they will use surgery to remove the ones not responding to the radiation.
So the plan is radiation, followed by avastin pills, many more MRI's and possibly surgery.
Shannon is not doing well mentally. She`ll deny it, but with realizing how bad her condition has degraded, having 2/3 doctors be less than positive about a prognosis, and not having the energy to fight has made her emotions very irregular. She's afraid, and there's lots to fear.
Doctors didn't give much reason to hope, she could be gone in the next few years, or it could be the next few months. I`ll try to keep everyone updated, but I`m already taxed being both brains. Shannon is also exhausted frequently, cannot read, and doesn`t trust herself to speak. If you call and she doesn`t answer leave a message. Otherwise I`ll try to read any messages to her.
Things are not good for Shannon right now. Over the past two months she's had to quit teaching (the Texas school system is a nightmare to begin with), cannot drive, and her memory is becoming sketchy. Perhaps the worst part is her ability to communicate is being affected. She cannot read, write, type, or speak clearly. Most of the time she can understand words spoken but its about 90% right now. She`ll not be able to read or write this blog.
Last Monday we met with our first doctor to try to assist with her cognitive issues, November she was able to teach, January she couldn't reliably form a sentence. A regime of vitamins and supplements were added. I noticed a small improvement, mostly in her memory, but her speaking became better as well.
Early Wednesday we met with a small heard of doctors, assistants and others. We had an MRI done, followed by labs, then finally the consultation. One of the doctors-in-training did neurological tests upon Shannon, including testing her ability to speak, read, and move her limbs. Despite doing better than she had been, in my opinion, she started to have a mental breakdown during the exercises. I think she had been denying her condition to herself, but after failing so publicly, without me being able to cover for her it hit her.
The MRI results are bad, we didn't take a picture, but not only is it growing in new areas, there are little spots that are also growing away from the primary tumors. The one growing in her language center has slowed, but it is again greatly displacing her brains shape. The doctors at that meeting were less than optimistic, their best seemed to be do radiation and take pills. Neither of which have had a track record of great success. The one good thing that did come from that consultation was getting Shannon on steroids to reduce swelling. That has improved both her cognitive functions as well as her ability to read and write. She was able to write the first paragraph with only some help. Lastly they recommended seeing another doctor for radiation assessments.
Friday we met with the radiologist, the doctor did recommend a course of radiation, it has been several years. I have my doubts, they didn't seem to do much before, and this would be a significantly less powerful version. We also wanted to speak with a surgeon, the tumor on the MRI seems predominately on the outer side of the brain.
Later Friday we saw a surgeon who was, to our surprise, not on the autism/Asperger scale. She was very nice, friendly and empathetic. She also did not recommend surgery as the first option. I was a bit disappointed, I had hoped that they could do some testing to see how much her left side is actually doing, and see if a large scale removal would be possible. Neither are, not without very significant risk. She did however suggest that after radiation, they would see if any areas are still growing, and if possible they will use surgery to remove the ones not responding to the radiation.
So the plan is radiation, followed by avastin pills, many more MRI's and possibly surgery.
Shannon is not doing well mentally. She`ll deny it, but with realizing how bad her condition has degraded, having 2/3 doctors be less than positive about a prognosis, and not having the energy to fight has made her emotions very irregular. She's afraid, and there's lots to fear.
Doctors didn't give much reason to hope, she could be gone in the next few years, or it could be the next few months. I`ll try to keep everyone updated, but I`m already taxed being both brains. Shannon is also exhausted frequently, cannot read, and doesn`t trust herself to speak. If you call and she doesn`t answer leave a message. Otherwise I`ll try to read any messages to her.
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