Tristan

Hi everybody....here are the notes I took from the doctor today...I also created a blog so that we can all share information whether we research it - talk to the doctor whatever.....
got to http://tristankastner.blogspot.com/. The blog is open to everyone right now so you can send along the address if you wish.

This is what they have found
Growth in brain - in brainstem - controls eye and all big inputs from brain
It's very high in the brain - very round 22cm x 22cm but has a nice margin
It lights up against contrast.

It is a benign tumor, in fact he thinks it is very benign so the good news is that it most likely won't be cancerous, the bad news is it can grow (at a very very slow pace).

The tumor has been there for a while - again super slow growing.

Plan of action

Tumor doesn't quite go to the end of the brainstem and is exactly in the very middle of the brain. So they don't want to remove it because they would have to get through 1/2 cm of normal brain and this could cause stroke like ailments.... weakness in the face or on one side of the body, therefore the tumor is not "resectable" (removable) because right now the "price is to high"

Next Friday the doctor will take this to his tumor board and will call Kim and Shade back within a week or so.
He will also talk with fellow doctors and will let you know what they say even if he doesn't agree with it.

The benefit of the tumor growing is that it will attach itself and could then possibly be removed.

Would like Tristan to see an Oncologist in a couple of months to see check for growth or symptoms of growth i.e swelling behind the eye.
In two months Tristan will have another MRI which will also include his spine to see if the tumor has grown or shrunk and to make sure there aren't any lesions on his spine.

If there comes a point that it is interrupting Tristan's life the Oncologist may want to try chemotherapy to attempt to control the growth.
"Look at this like diabetes" it's something that needs to be managed right now.
The chemo for this particular type of tumor is better tolerated than some other types of chemo. This is not the plan of action right now but would likely be the plan of action if Tristan shows 'signs'

Bad but possible - Canals that are big on the inside would get blocked and they would need to shunt them or put a whole in the bottom of the brain to allow the liquid to escape. Aqua duct still open so this is not an issue right now.

What to watch for - Hydrocephalus
Symptoms: severe nausea, headaches, blurry vision(might be hard to tell because he is so young), irritability, lethargy
The symptoms are not subtle....
Watch for lost milestones - and let the doctor know if this happens

If the tumor grows you will most likely see the symptoms in his eyes (big pupils) weakness in an arm or on one side of the body, so if he favors one particular body position again, symptoms are not subtle.

If he gets sick like the flu and has a fever that's a good thing, also if diarrhea that is a good sign. Diarrhea doesn't come from the brain at all.

Call nurse (Kathy) if you want to talk with someone about normal stuff vs. symptoms of the tumor

The urgency to see an oncologist is for the parents sake, not because the doctor has a sense of urgency but understands that the parents need to know

The doctor is 95% sure of the type of tumor "Pilocytic Astrocytoma" again not positive

When researching make sure to stick with University Center and parent support groups. Not one off random reports.
University of Utah, St. Jude and Memphis are the ones he mentioned

Here is the doctors info.....
The University of Utah Department of Neurosurgery
Division of Pediatrc Neurosurgery
Jay Riva-Cambrin, M.D., M.Sc., FRCS.(C)
Assistant Professor of Neurosurgery
Phone (801) 662-5340 Fax: (801) 662-5370
jay.riva-cambrin@hsc.utah.edu
Primary Childrens Medical Center
100 North Medical Drive Salt Lake City, Utah 84113-110