Sunday, March 29, 2009
Wednesday, March 25, 2009
Sunday, March 22, 2009
It's been a couple of days....sorry about that.
Saturday morning started with Tristan's mommy finding out that her car had been stolen sometime during the night. Sheez - this is not the first time. So... Uncle Rindy and Aunt Nikki came to pick us up, drop mommy off at Enterprise to get a rental car and then she went to work.
Uncle Rindy, Aunt Nikki and I knew that Grandpa wanted to see me, the Wiggles Monkey, so we packed us up, in the truck of course - that way "I" can see right out the front window, and headed to Alpine.
On the way we stopped at the store so that Aunt Nikki could get stuff to make a manicotti for Grandpa so he didn't have to make Sunday dinner. (Crazy Grandma Isham is on a cruise with her brothers and sister this week).
Uncle Rindy made a rainbow chip cake with yummy frosting and I ate some frosting to make sure it wasn't poisen :-).
Mommy and Daddy were both home from work when I got home, smiles for all.
Saturday morning started with Tristan's mommy finding out that her car had been stolen sometime during the night. Sheez - this is not the first time. So... Uncle Rindy and Aunt Nikki came to pick us up, drop mommy off at Enterprise to get a rental car and then she went to work.
Uncle Rindy, Aunt Nikki and I knew that Grandpa wanted to see me, the Wiggles Monkey, so we packed us up, in the truck of course - that way "I" can see right out the front window, and headed to Alpine.
On the way we stopped at the store so that Aunt Nikki could get stuff to make a manicotti for Grandpa so he didn't have to make Sunday dinner. (Crazy Grandma Isham is on a cruise with her brothers and sister this week).
Uncle Rindy made a rainbow chip cake with yummy frosting and I ate some frosting to make sure it wasn't poisen :-).
Mommy and Daddy were both home from work when I got home, smiles for all.
Wednesday, March 18, 2009
Wednesday March 18th, 2009
Aunt Nikki and Uncle Rindy got to spend some time with Wiggles Monkey today and it was awesome. We went for a couple of walks - a neighbors dog (nice doggie) was barking and barking at us so we leared "oof off'. We said hi to the ducks and told then "kack kack." We banged on pots and pans, played the piano, climbed the stairs, made a great mess and had a lot of fun. Oh and we sung on the swing - awesome.
Daddy (Shade) picked him up early evening, Monkey is always happy to see his daddy and they played here for a little while before heading home.
Tristan's eye looked a little tired this evening but didn't go 'out' like it has in the past so that's a good thing. He is and will be a normal happy playful full of life little boy. Thank you god for this awesome gift, Tristan.
Daddy (Shade) picked him up early evening, Monkey is always happy to see his daddy and they played here for a little while before heading home.
Tristan's eye looked a little tired this evening but didn't go 'out' like it has in the past so that's a good thing. He is and will be a normal happy playful full of life little boy. Thank you god for this awesome gift, Tristan.
Tuesday, March 17, 2009
Tuesday March 17th - Happy St. Patty's
Mom (Kimi) said we (Tristan) are going to stop taking DHA as it "stimulates brain cells" (it says it on the bottle) and we don't want to be stimulating anything right now in the brain.
Grandma Kathryn would like to give Tristan Phytoplankton so Kimi has emailed the doctor to make sure that it will have no ill effects, better safe than sorry...
Kimi's psychiatrist said that 5-10% of the population have brain tumors and never even know about it. I think this is a good news?.
Now for the important stuff, Tristan must have his blue Tonka truck today. Oh and crashing cars together is fun! He had a two hour nap today and only woke up to get the truck to sleep with. Awesome!
Lastly, here are some comments I copied from Facebook...
Neesha (Hansen) Stearns posted -----thanks Neesha!
"I just looked at your blog - what a heart breaker - hang in there, and have faith. I have watched a miracle happen in another little family with their little girl - they do still happen today."
Renee (Thompson) Bronson posted.....thanks you Renee love you too.
"Nikki, we are so sorry about Tristan. Your dad called mine and said he was giving Tristan a blessing. He is in our prayers too, and all the rest of you. You and Kimi give each other a big hug from Idaho. Love you. I know its hard, but DON'T lose faith."
Grandma Kathryn would like to give Tristan Phytoplankton so Kimi has emailed the doctor to make sure that it will have no ill effects, better safe than sorry...
Kimi's psychiatrist said that 5-10% of the population have brain tumors and never even know about it. I think this is a good news?.
Now for the important stuff, Tristan must have his blue Tonka truck today. Oh and crashing cars together is fun! He had a two hour nap today and only woke up to get the truck to sleep with. Awesome!
Lastly, here are some comments I copied from Facebook...
Neesha (Hansen) Stearns posted -----thanks Neesha!
"I just looked at your blog - what a heart breaker - hang in there, and have faith. I have watched a miracle happen in another little family with their little girl - they do still happen today."
Renee (Thompson) Bronson posted.....thanks you Renee love you too.
"Nikki, we are so sorry about Tristan. Your dad called mine and said he was giving Tristan a blessing. He is in our prayers too, and all the rest of you. You and Kimi give each other a big hug from Idaho. Love you. I know its hard, but DON'T lose faith."
Monday, March 16, 2009
Monday March 14th, 2008
Yep Tristan on the brain all day everyday. Thank you to all that have prayed and sent loving happy thoughts our way, we need all we can get for our miracle baby.
Friday, March 13, 2009
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
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
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