Tristans Video

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.

Latest results from 2nd MRI

May 21, 2009

NOTES OF MEETING WITH DR. CAMBRINE AT PRIMARY CHILDRENS HOSPITAL.

Kimi, Shade, Tristan, Jeannie and I met with the Dr. yesterday afternoon to discuss the finding from the MRI and CT Scan from last week.

1. The scan of Tristan’s complete spine was clear with no abnormalities.  Whew!

2.Tristan’s Brain stem tumor has grown 2 millimeters from 22.24mm to 24.24mm.  The growth occurred on two planes.  The growth is still perfectly symmetrical, the most symmetrical this Dr. has ever seen.   The tumor is also clear which I take to mean the same density throughout.

3.  The Dr. asked extensively about Tristan’s eye which stays out when he is tired.  He also physically examined Tristan by checking reflexes in arms and legs, strength in arms and legs, uniformity of smile on both sides of face and any muscle weakness in the face.

4. The Dr. said he was slightly more concerned about the Tumor because he did not expect it to grow as much as it had.  However, his increased concern was offset by no more frequent or longer duration of Tristan’s eye going out.

5.  He wants to do another MRI in two months, July 15^th, 2009.  This will be the same amount of time between MRI’s as just passed between the first and second MRI.

6.  If the tumor continues to grow at the same rate and there are no additional symptoms the Dr. said we may have to discuss the possibility of either operating to remove it or trying to shrink it through Chemo Therapy.  The Chemo would be a very mild type.  Before either was done we would consider a biopsy to determine the exact nature of the tumor and perhaps dictate the treatment.

7.  The tumor seems to be growing toward and pushing toward the side of the brain stem and moving nerve ending out of the way which might allow it to be removed surgically. 

8.  If the Dr. were extremely concerned he would not wait another two months to do an MRI.

9.  We should continue to look for the following symptoms:  headaches, difficulty swallowing, vomiting, face muscle weakness, difficulty with tongue.

10.  There is a chance the tumor will regress.  Often this happens when a child enters puberty.

11.  Although it has grown part of the growth could be because it is for some reason retaining water and causing it to look bigger than when previously tested.

12.  No sign  of Hydo cephalus.  In fact the risk looks significantly less since the opening has increased versus narrowing.

13.  I asked whether the growth was part of the natural growth of the brain.  The Dr. said the brain is fully grown at two years of age.

14.  Intermittant wandering of Tristan’s eye is good.  Would not be good if it stayed out.  The eye wandering is most likely caused by the tumor pushing against the nerve since it is located in that area of the brain.

15.  The reason the eye goes out when Tristan is tired is that the muscles that try to keep the eyes working together and the good eye tries to compensate and hold it in are weak when he is tired.

16.  Dr. and collegues still believe the tumor is benign.

17.  The symptoms we are to watch for are generally not subtle.  We’ll know.

18.  Kim asked if her fall and the mixing of blood platelets could have caused the tumor.  The Dr. said no.  This was not caused by something that happened during pregnancy. 

19.  The Dr. did not endorse but did not discourage homeopathic vitamins and minerals.

My feelings are that it must be frustrating for Tristan when his one eye goes out and he loses depth perception.  Anything we can do to keep him calm and happy should help reduce his stress and be better for him.  It is a good thing he has a mom and dad, grandpa and grandmas, aunts and uncles and cousins that treat him so well and dearly love him.

Kim asked if I would give him another Priesthood blessing.  I told her I would be honored to do so.  Mom and I discussed fasting before the blessing for additional strength and to show our Heavenly Father our willingness to do anything to help Tristan.  I discussed it with Kim and she is going to talk with Shade and have us all fast together.  We’ll let you know when that will be and any other family members and loved ones are welcome to join us in the fast and prayer.

 

Grandma is home from her cruise - woohoo! Tristan missed her - as did the rest of the family.

Aunt Nikki and Uncle Rindy watched me Friday night....check out the fun we had.

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.

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.