Monday, December 30, 2013

Revised Chemo Plan


Clarification and correction on Ethan's treatment plan or as it is referred to at the hospital Ethan’s Road Map:
The Chemo part is like an Outline with the Roman numerals ( I., II., III.) represent what we are calling “rounds” and the each round has what the hospital calls “Cycles” of Chemo (A. and B.) The kind of Chemo he receives during cycle A is different than Cycle B.
With that in mind here is the Plan. Again this is the plan and the chances of us staying in line with the plan are slim to none. Based on the truthful advice of those that do this all the time and are willing to be upfront and honest. We are setting the expectation that we will not be done with this till later dates than listed below and then it will take a good year for things to recover (i.e. his strength, chemo fog, etc..)
Here is the Road Map:

I.               Round 1
a.     Cycle A  Done
b.     Cycle B  Done
MRI
II.             Round 2
a.     Cycle A, December 18, 2013  Done
b.     Cycle B, January 8, 2014
MRI
III.           Round 3
a.     Cycle A, January 29, 2014
b.     Cycle B, February 19, 2014
MRI
IV.           Radiation starts March 5, 2015 (5 days a week for 4 weeks)

Again we don’t expect this to go as planned but hope that it will.


Ethan is doing well and has started back up doing home school again. His eyes are still steadily improving however they are not yet good enough to play video games or read. He can make out letters and words but it seems to be like trying to read the letters of the distorted images (usually letters) on a web page that makes sure you are not a computer. Reading an entire page of that would tire me out too. Still lots of laughter and joy in the home.

Monday, December 23, 2013

Back at it!

From Drew:

We have now started chemo again and are in round 2 of 6 and more specifically Cycle A is done as of 12/20/13. Probably the smoothest cycle thus far. Ethan and I laughed so much the second night that we had to stop a couple of times so he could recover. The nausea was/is virtually non existent and we are 48 hours post Chemo and he came outside today to help wash the car (held hose). He was exhausted about 1/2 way through. So it doesn't take much to wear him out but his desire to overcome is strong.

Gandalf:
We have received  the pathology report and a video on Gandalf.  He is officially a Germ Cell tumor: Mature teratoma, grade  1, measuring 3.5 x 1.2 x 1.2 and he was removed in one piece. I pause at this moment just to say watching the video of the doctors tugging and pulling the tumor out of our sons brain brought on a set of feelings that I have never felt and not yet been able to place into words. OK back to it. Gandalf was mostly pink with a bright red area. He was slightly sticky. There was a small section(1.3 ×.02 × .02) of gray- tan tissue as well. This Gray tissues is most likely actual brain tissue that was removed while cutting him loose.

Post MRI s:
Edema (swelling) and mild diffusion restriction (slowed blood flow)  was seen in both post MRI s located in the splenium of the corpus callosum (the communication between the two halves of the brain), thalamus (Similar to the old operators but of our senses),  and the right optical lobe(left field of vision). Brain stem (basic function like breathing) is normal.  Cerebral aqueduct is back to normal.

The symptoms associated with of all this are mostly his eyes. There are 2 parts to this. First his eye movement. He has a bit of a crazy eye. :)  Most likely due to the edema and the pressure on the brain stem being removed. With the pressure gone, the signals between neurons (wires) are having to adjust back to normal. Kind of like "sea legs" and after being on the water for a long time having to adjusting back to being on land. The second symptom is what he sees is odd. It originally was blurred and warped but now what he sees shaped like the letter Y laying on its side.   So when he looks at a straight bridge the right side of it is normal then as it passes through the left field of vision it separates into 2 bridges creating a Y shape. Needless to say I won't let him drive my car yet. He also has two blind spots. If he looks straight at your nose he won't see your right eye or the left side of your chin. He told me the other day it looked like my tongue was coming out of my beard.Yes i was sticking out my tongue at him like a 5 year old. :) Edema's in the brain have been known to take up to 6 months to go away so we are not in a rush. The ophthalmologist can see that the eye nerves are swollen by looking in his eyes. There is and has been very slight but steady improvement in all these symptoms.  We are encouraged by this and hopeful it will continue.  At the moment there is no reason to not expect a full recovery with time.

He has been having headaches that come on very quickly and start right behind the eyes then move down his neck. They rapidly increase in pain, using a 1 to 5 measurement with 1 being little and 5 being very painful,  the headaches go from 1 to 3 or 4 in as little as 20 minutes. The ophthalmologist, Dr. Leon, pushed for a spinal tap to measure the CSF pressure and he was right it was at 29 when it should not be over 18. The why is not known and will be discussed until post Christmas.  They removed about 6 m? to relieve some pressure and he has had no headaches sense. In an attempt to control the pressure, a diuretic call Diamox will be used. It has been known to lessen the production of CSF.

Now we wait till after the holidays and for the doctors to meet and discuss what steps to take next. We will continue to have blood drawn 2 times a week and work on finishing the semesters school work. Then Cycle B of round 2 of Chemo will start on January 8. With the complete removal of Gandalf the Chemo plan will stay the same as well as the number of radiation treatments however the quantity of Radiation during each treatment will be less. :)


Thanks again for all the support it is at times very overwhelming but very important and very needed. THANK YOU So MUCH!


Tuesday, December 17, 2013

Chemo then Christmas!

From Beth:

Ethan is getting back into life a little bit each day. He is seeing improvement in his vision, but still gets frustrated with it. We had a check up on Friday Dec.13th. Eye doctor can still see swelling , but also sees improvement.

We also saw Dr. Velez, our oncologist. We are picking up chemo where we left off before the surgery. This means we start tomorrow (Wednesday). We have four more rounds to go. We will be admitted to hospital to do chemo for 3 to 4 days and be home for the weekend. It is our hope that Ethan will be feeling better by Christmas and to be able to enjoy it!:)  He has been looking forward to Christmas for months!!

(Ethan has tried to talk Drew and I into putting lights up on the house for a couple of years now. We have not been motivated to do this in the past, but was thinking if anyone who knows Ethan and would like to surprise him with lights when he comes home from hospital just give me a call 985-377-4452????)

Ethan and I have started up on some school. I read everything to Ethan and then he dictates to me what he wants for answers. This has been a challenge, but good for him too! :) Moving forward with life is a challenge when your body is still very tired, and the eyes are not doing what you want them to.

We have been blessed with our sweet neighbor, who has been making meals for us for over a week now. It is sometimes very overwhelming the kindness of so many of you giving and supporting Ethan and his family through this journey.

We are truly a blessed family for many friends and family that walk this journey with us!! Thank You!



Saturday, December 7, 2013

HOME!

Ethan came home on Thursday. We had thought it would be Friday, but when the Doctor came in and said, Would you like to go home?" I could not pack us up fast enough!
 
Ethan was very excited to be home. He walked into the house all on his own and was able to walk through out the whole house! He kept saying everything seemed different. We all just watched him embrace being home.

Our first day at home was interrupted with a trip back to the hospital to have a couple of stitches put back in the drain spot.  Dr. Roberts was able to get us right in.  The whole endeavor was an adventure.

When we got there I was helping Ethan get his bandage off of the drain spot. Apparently, I was a little too slow, because the dr, reached over and said, "Grit your teeth, Ethan! ONE, TWO! HUT! HUT!" and then he ripped off the bandage- it hurt because with the bandage came some baby hairs that have been growing back. Wow!! Then the Dr. handed me some gauze and I realized I would be assisting in these quick stitches. As the doctor got his "C" like needle threaded up, Ethan asked if these stitches were going to hurt. The Dr said, "Yes" as he began the first stitch. Ethan was squeezing one of my hands very hard while I am dabbing the blood with the other and of course, I'm cheering Ethan on! He is the MAN!!! Dr. Roberts was fast and as soon as he started it was over. Ethan was in a bit of shock and I couldn't help but laugh at this whole story.

We needed to stop by the eye clinic next. (All these clinics are at the hospital) The eye doctor wanted to talk about Ethan and wanted to examine him.We had not planned on this, but having some feedback on how Ethan's eyes are healing would be welcomed. Ethan endured yet another eye exam- he was a very tired trooper!

The eye doctor saw improvement in all areas of his eyes. Ethan has two blind spots that we hope will heal. He still has a warped look. Ethan described it to the eye doctor as being in a house of mirrors and then the mirrors crossed over each other. (???)

The eye doctor said again, "Time is what he needs to heal."

Last night, Ethan started having the excruciating pain behind the eye feeling. We scrambled a bit to get some pain meds from the doctor. Within 45 min., we had them in hand and Ethan was able to take them- they were fast acting and he was feeling great quickly! No pain!!!

Ethan will be recovering this week and then we go back in to see the eye doctor. On the 18th, we see Dr. Greene and Dr. Valez about the pathology report on the tumor and to find out what the next step for Ethan's treatment will be.

We are very grateful for all the support and prayers! THANK YOU! THANK YOU! THANK YOU!

 Here are a few pics from the week:


 Mrs Hoff's English Class from Nebraska Christian sent cards and a banner for Ethan.
Ethan's gma and gpa were here 





Monday, December 2, 2013

Sunday recap

Yesterday, we decided to have the Tordial given every 6 hours and that has allowed us to stay on top of the headaches the last 24 hours. Prior to that, he was getting bad headaches about every 12 hours they were bad enough he would squirm and moan due to the pain. We have been pushing hard to not use the Valium.

I brought up some comedians on computer yesterday and he couldn’t help but laugh and after about 5 min asked me to shut it off cause it hurt to laugh. Still has his humor :) Today’s nurse was named Mary and Ethan asked her if he was her little lamb. lol


He ate better yesterday too.

He is still sleeping 20 hours a day. We have been pushing to get him to stay awake longer.That has proven tough. This morning, Dr. Greene came in and grunted because Ethan was still asleep. This is why we're doing an MRI and an eye exam for Monday(today) because all this sleep has him (Dr. Greene) “puzzled.” It’s not that Ethan is not trying, he just can’t stay awake!

The blurry vision is still there and he asked mom today if that would go away. He is clearly processing thru that…. So am I.  YUCK! They say it will get better, but Beth mentioned she read some report that mentioned the edema's (swelling) around the Thalamus and the Occipital Lobe but also the Brain Stem. This had not been shared with us. I read it myself tonight and now need to decide how to handle it. Makes a guy wonder what else is not being told??

We are very grateful for all the family support we have received this past week!!

Sunday, December 1, 2013

Saturday Update

Ethan had a good Saturday. He did have some head pain the night before and again this Saturday afternoon. We have figured out that keeping up on the pain meds. and not letting them run out will be good to keep pain at bay- we hope.:) 

Dr. Greene has scheduled an MRI and eye doctor visit for Monday. We have some direction- this feels good.

We moved down to 4 west floor. This is oncology floor. Ethan is glad to have some silence; there is not as many beeps going off on the 4th floor.

 He ate mac and cheese, yogurt, and of course, hot chocolate. He was able to take a shower and sit in a chair for a little bit too. He has kept his eyes open for the longest time saturday, this is improvement. Still blurry, but he is finding the positive.... no homework till the eyes are better!:) Each day it is a few steps forward.

 Charlie and Alvena (Ethan's Grandparents) also Clint and Amie (Ethan's Uncle and Aunt) And cousins Sydney, Caden, and Olivia all came to be with Ethan for thanksgiving. We feel very blessed that we were able to be together through this emotional week.

 thanksgiving meal
A week ago, Thursday, we were walking on the beach enjoying together with our friends Chad and Ming. They blessed us with 24 hours of R&R before the big surgery day. We enjoyed the cold weather (Ethan loves being cold at the beach) and most of all the peace that God has given Ethan while E is in his hands. Today, a week later, we have the same peace, and much to be thankful for with the tumor gone, all the while Ethan's destiny being protected by his creator.




 Many tears, prayers, and truths spoken this week.  I am grateful that we are not orphans, but children of our heavenly father. God's love never fails!

We have been very encouraged by all the prayers, messages, and visits.

Thank you to the many who are praying for our boy Ethan!!!

God has been ever so faithful to be in our presence each day with his peace and love.
Blessings!!

 day before surgery



 uncle clint
 Aunt Amie and cousin Syd