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!