Another round

Yesterday mommy and daddy went to chemo with me. I just had to have Vencristine but it still sucks and I was a bit ornry about it. Uncle Rindy stopped by around 8:00pm and I was already asleep for the night. 5 more weeks until our next MRI. 2 more weeks of pills and 2 weeks of rest. I think we will all be very happy for the break but please keep those prayers coming for that miracle. Love to you all. Merry Christmas to you and your family's we wish you all happiness and health.

Tristan Chemo update

Hi everyone,

Mommy took Tristan to the hospital yesterday for chemo, we are in the 5th week so he only had to have the Vincristine (inhibits the microtubule structures within the cell). It took a little less time so that was good.

The little guy is hanging tough. Keep those prayers coming and please wish for a miracle for our Tristan - that's all this family wants for Christmas!

Happy Holidays everyone, thank you as always for your support.

Tristan's chemo went fine on Wednesday. He slept all the way through it his mommy said. The evening wasn't quite as easy but Kimi is able to keep a handle on it with the medications. Grandma Isham went up yesterday and spent the whole day with him. He followed grandma around the house all day while she cleaned up their house. They played and had fun and Tristan was in good spirits.

Wednesday, Grandma Kathryn and Mommy took Tristan for his first chemotherapy treatment. Tristan got thru it like a champ! In fact better than a champ, he is the king of champs.

Anyway...later that evening things didn't go so well, he got really sick to his tummy and well let's just say, jammies, blankies, sheets, floor and door were ewwwwwww ;-(. He did though, his mommy said, throw up and as soon as he was finished looked over smiled at her and said hi mom. Awww.......... after multiple medications mommy got things under control about 5:00am and he went to sleep at 7:00.

The hospital said that it is sort of a guessing game but as soon as they figure out the combination to keep his tummy calm - it will work every time. So let's pray this next time they find the magic combination.

Anyway, this is the first week of a very long 8 weeks. Each Wednesday be sure to send those prayers.

Thank you everyone for your constant support, our family appreciates it so very much.

Special thanks to Grandma Kathryn who has been here done that and has a big enough heart to do it all over again.

November 12, 2009

Tristan loves his Grandpa!

Tristan Update....not so good.

Not a lot of time nor have I been able to go to the appointments lately with my knee surgery.

Tristan had a port put in on Monday because he will be starting a low dose of chemotherapy next Wednesday. The tumor has grown 20% in the last three months. The doctors say that the side effects should be very minimal and that this is the best route.

Pray Pray Pray!!!!! Tristan, his mommy daddy and family need those prayers/

More soon....

Tristan Update

Hello everyone,

Tristan is making great strides. He has been home from the hospital for almost 2 weeks.

He did the 'Hulk' so freakin' cute. His eyes are opening a bit more. He has walked a bit and is saying a bunch of words like Bye, Hi, Tristan, Bonk, Zip Zip, Gus Gus... (he and aunt Nikki have been watching Cinderella). The oncologist says there may be further treatment necessary but at the moment we are waiting to hear that from Dr. Riva-Cambrin. The thought of the little guy having to go through more at this point is almost unbearable.

Everyday he get's a little stronger and we ask that you continue your prayers in helping Tristan recover and flourish.

Thanks to everyone who loves....

I will keep updating the site weekly.

Just wanted to give everyone a quick update - Tristan's surgery went great, they believe they have removed 90-99% of the tumor and it was benign. More details coming thank you all for your thoughts and prayers, keep up the great work ;-)

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.

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."

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.

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