Primary Childrens Hospital meeting today at 10:00am
In attendance:
Grandpa (Bill) Isham
Mom (Kimi) and Dad (Shade) Kastner
Aunt Nikki (Chamberlain)
Grandma Kastner (Katherine)
Grandma Isham (Jeannie) was playing with Tristan, at Tristan's house while we all met.
Here is the information the doctor gave us today. It was about an hour long discussion so I am attempting to keep it 'real'.
Because the tumor is now 26mm by 21mm and has grown "significantly" enough to force us to do something" per the doc,....we are now looking at surgery for Tristan.
Tentative date August 6th (Thursday) The name of the procedure is (don't quote me) interhemisphere intfornus seal. ( I searched for information on the Internet but didn't find any, if someone does please please please post it).
The approach (at least the best I can remember it would be - and in the simplest terms)
The surgeon will remove a section of the scull approximately 2 inches by 1 inch, then would pull back the "leather like" covering of the brain, and basically go through the direct middle of the brain between the two hemispheres and separating multiple layers until the tumor was visible.
Note: The doctor said this process alone can take 2-3 hours.
Once the tumor is exposed they take a biopsy, and have a pathologist look at it to determine the cell type and that it is indeed benign.
Once this is determined the surgeon "hits" it with a laser to break it up and then uses suction to remove it.
Once the majority of the tumor is removed the "rind" of the tumor is scraped, removing as much as possible. The doctor said this how they "kick it in the teeth" so that any that remains will die and/or will not continue to grow.
The whole procedure will take approximately 8 hours (assuming all goes well).
Tristan would be in ICU for approximately 24 hours, and god willing and if all goes well could be back 'ok' within about 4 days. He would be in the hospital for about a week.
There are obviously risks galore and the possibilities of paralysis, weakness, googly eyes etc. however, the doctor said that because children are the best healers of themselves that if in fact there is residual effect however remote the likely hood. (approximately 1% in may instances) the hospital has rehabilitation specialists that will get him back to normal within weeks. The googley eye should take care of itself and if it doesn't the Moran eye center can fix it.
This is the only version I can write without drowning the computer in tears and will attempt to expound in the next few days.
God bless Tristan and his family.
From Grandpa Isham (Bill)
ReplyDeleteJuly 21, 2009
Notes from July 15, 2009
Dr. Consultation regarding Tristan and the MRI taken this morning.
Tristan’s right eye is out all the time, meaning it does not track with the left eye. This is undoubtedly caused by the tumor since it is in the exact location of the brain stem that controls this function.
The MRI shows the tumor has grown “ not insignificantly” from the original MRI four months ago.
Ventricles are sneaking up which are slowly kinking off. However they are still open. The risk is shutting off and hydrocephalus (sp). This does not allow the fluid around the brains to drain. It causes great sickness and if not addressed immediately could cause death within twenty four hours.
The growth of the tumor is forcing us to act.
The growth may be giving us a corridor to reach the tumor.
The scale has now tipped to operate versus wait and see.
Chemo is not an option. Chemo requires knowing the exact type of tumor so the chemo can be matched to kill it. This requires a biopsy which is as invasive as trying to remove the tumor.
From the original, between MRI’s one and two the tumor grew 5 mil. W and 3 mil. Tall.
Between MRI’s two and three the tumor grew 2-3 mil. W. and 2-3 Tall. This is causing the tumor to impinge on the fluid tracks.
Almost completely certain the tumor is benign. If it had been malignant it would have grown 5-10 times as much over the same period.
SURGERY TO REMOVE THE TUMOR:
The surgery would take eight hours. We were shown a model of the head and brain and computer images of Tristan’s Brain. They would enter from the top and follow the midline. The Dr. is able to monitor the position of instruments in real time during the operation to guide him to safe paths.
Tristan would be in ICU one to three days and then a private room where family can be with him twenty four hours a day. When he leaves ICU he will only be on Tylenol, since the brain has no pain receptors and children heal quickly.
The Dr. has extensive experience with tumors. He was a tumor specialist in Toronto where patients with tumors were brought from all over Canada and all over the Middle East. He has seen hundred if not thousands of tumors. The family feels confidant he is the right person to perform the surgery.
Scheduled Date of Surgery at this time is August 6, 2009.
Risks of Surgery:
Risk of mortality: 1-2 %
Likely: 50%/50% Eyes will not track together. However. In three recent cases with almost identical size and placement of tumor, the eyes did not track after surgery but in two cases in a few weeks they began tracking perfectly. In the third case an Ophthalmologist had to perform a minor surgery which corrected the problem.
Risk of some Paralysis: If this complication occurs, it would likely be that there was weakness on one side of the body. This could be corrected with Rehab. There is a small possibility there could be permanent paralysis on one side of body or parts of one side of the body.
The area of the brain where the tumor is has nothing to do with the area of the brain that controls mental abilities.
There is a general consensus that everyone present felt better about moving forward with the surgery. That having been said, we are praying that when they perform the final MRI just before surgery, the tumor will have gone away.
Bill Isham