Tuesday, November 29, 2005
More news
You will now see the difference between John and I. John is succinct and to the point and I am verbose. For those of you who love succinct information, John is quite correct. Alice is out and doing well. For those of you who like verbosity, here it comes.
Alice is out and she is doing well. The surgery was a little longer than anticipated but went smoothly and she looks great. I was amazed how wonderful she did immediately post-op. She was talking and sitting up and all. The night was long (as nights in the ICU are), not alot of sleep and alot of restlessness for both Alice and myself (I stayed in the ICU with Alice). Today she is tired. She has slept most of this morning and is just now more awake. Alice hates taking any pain medication and is incredibly stoic. We are going to be transferred up to the 10th floor this afternoon and will spend the night and if all continues to go well, we'll go home tomorrow afternoon. She is scheduled for a MRI of her spine this afternoon. This is a long MRI, 3-4 hours.
So the surgery went well, it's the results that sucked however. It appears Alice has astrocytoma cells covering most of the right side of her brain. They think that these cells are free floating and just landed here but in reality it involves her entire central nervous system (brain and spinal cord) and treatment will have to be of her entire brain and spinal cord. They think most likely these cells originated in her spine and are a metasis from there. She has been complaining of some sacral (lower back) pain over the last month or so. She is scheduled for a spinal MRI this afternoon which may or may not give us more information. The current thought is that the best treatment option is chemotherapy directly into the central nervous system through what is called blood brain barrier treatment. Another option is radiation, however that would have to be of her entire brain and spinal cord and that is generally not something they like to do.
As best as I understand, the final biopsy will not be available until Wednesday or Thursday (possibly as late as Friday) and after these results and the MRI results are evaluated, there is a big team meeting on the 16th of December and a game plan will be made after that meeting. They state that Alice needs time to recover from her surgery before they consider something invasive such as the blood brain barrier stuff. My understanding (I am learning) is that there is a neurosurgeon here at Doernbecher/ OHSU that has been pioneer at developing this method of therapy and that people travel from states away to work with him. He has quite a reputation (sorry I have forgotten his name; lack of sleep and stress and way too much information is a bad combination. His name is Ed something). My understanding is that the treatment is done in surgery and then she spends time in the ICU and then inpatient on the oncology unit. It's big time stuff.
It just seems with each tumor, each step, it all gets more complex. After all the scans and biopsies are back hopefully the decision will be clear. Hopefully we'll get some more info as to what the odds are it will be successful or not also. I guess that is information we want.
I knew going into this that the biopsy was just the tip of the iceberg, but damn ... I think this is more than any of us were expecting. Certainly Selden (her surgeon) and Stacy (her oncologist) were surprised by the extent of it all. We heard repeatedly that this is "most unusual", "rare", and other phrases you don't like to hear when they're talking about your child's condition.
I spent alot of sleepless hours last night considering the meaning of life, lessons, letting go, and love. All I can say is, each day is a gift and if ever you need reminding of that ... give me a call.
Today, we are here. I am trying hard not to get too far ahead of myself. As always, it's one step at a time. Be here now.
love and peace always,
Susan
Alice is out and she is doing well. The surgery was a little longer than anticipated but went smoothly and she looks great. I was amazed how wonderful she did immediately post-op. She was talking and sitting up and all. The night was long (as nights in the ICU are), not alot of sleep and alot of restlessness for both Alice and myself (I stayed in the ICU with Alice). Today she is tired. She has slept most of this morning and is just now more awake. Alice hates taking any pain medication and is incredibly stoic. We are going to be transferred up to the 10th floor this afternoon and will spend the night and if all continues to go well, we'll go home tomorrow afternoon. She is scheduled for a MRI of her spine this afternoon. This is a long MRI, 3-4 hours.
So the surgery went well, it's the results that sucked however. It appears Alice has astrocytoma cells covering most of the right side of her brain. They think that these cells are free floating and just landed here but in reality it involves her entire central nervous system (brain and spinal cord) and treatment will have to be of her entire brain and spinal cord. They think most likely these cells originated in her spine and are a metasis from there. She has been complaining of some sacral (lower back) pain over the last month or so. She is scheduled for a spinal MRI this afternoon which may or may not give us more information. The current thought is that the best treatment option is chemotherapy directly into the central nervous system through what is called blood brain barrier treatment. Another option is radiation, however that would have to be of her entire brain and spinal cord and that is generally not something they like to do.
As best as I understand, the final biopsy will not be available until Wednesday or Thursday (possibly as late as Friday) and after these results and the MRI results are evaluated, there is a big team meeting on the 16th of December and a game plan will be made after that meeting. They state that Alice needs time to recover from her surgery before they consider something invasive such as the blood brain barrier stuff. My understanding (I am learning) is that there is a neurosurgeon here at Doernbecher/ OHSU that has been pioneer at developing this method of therapy and that people travel from states away to work with him. He has quite a reputation (sorry I have forgotten his name; lack of sleep and stress and way too much information is a bad combination. His name is Ed something). My understanding is that the treatment is done in surgery and then she spends time in the ICU and then inpatient on the oncology unit. It's big time stuff.
It just seems with each tumor, each step, it all gets more complex. After all the scans and biopsies are back hopefully the decision will be clear. Hopefully we'll get some more info as to what the odds are it will be successful or not also. I guess that is information we want.
I knew going into this that the biopsy was just the tip of the iceberg, but damn ... I think this is more than any of us were expecting. Certainly Selden (her surgeon) and Stacy (her oncologist) were surprised by the extent of it all. We heard repeatedly that this is "most unusual", "rare", and other phrases you don't like to hear when they're talking about your child's condition.
I spent alot of sleepless hours last night considering the meaning of life, lessons, letting go, and love. All I can say is, each day is a gift and if ever you need reminding of that ... give me a call.
Today, we are here. I am trying hard not to get too far ahead of myself. As always, it's one step at a time. Be here now.
love and peace always,
Susan
# posted by heinzfamily @ 11:54 AM 
