Well today was the day. Because the day turned out to be such a marathon, I’ve decided to do this post chronologically.
(9:30am) My parents and I arrived at the hospital and went straight to the oncology suite. We checked in and I was almost immediately taken back. I’m still not sure if this is because I had a pleather of things to do and many people to see or if it was just a quiet morning. As soon as we were placed in a waiting room a nurse took all my vitals. Everything looked good. Then I was taken by another nurse to have my post accessed. Everything was running very smoothly, just one thing after another.
When I got back from having my port accessed a doctor, whom I hadn’t met before, was there to ask me a whole bunch of questions. These questions being a little more in depth than the usual infusion day. As she was doing the exam, more and more doctors started tricking in and by the time she finished the exam our little room had about ten people including the legendary, infamous, Dr. P. Business as usual, he did a few quick tests including looking back into my eyes. Then, with all the doctors ready to jump into their terminology that’s not meant to scare anyone but obviously does, I left. Even being sixteen, I’d much prefer to get the quick, simplified, sugarcoated version from my parents.
(11:00am) My parents came out of the meeting and told me we quickly had to run downstairs because we were being squeezed in to see Dr. A, a well renowned neuro-ophthalmologist. As we signed in to see the doctor my parents filled me in on the meeting. I already knew some about the MRI’s results because the doctors had called earlier in the week.
The MRI looked pretty good. The tumor has actually shrunken from the first scans and there’s an obvious change in certain parts that likely means it’s dying. The only down side was that the fluid pools that were obviously too big in my very first MRI (right before I had surgery), and had then been drained during surgery, were now starting to fill up again.
In this picture you can see the first MRI (left) from right before my surgery. In that picture the fluid pools were much too big and that’s why during my surgery the surgeon opened up a place for the fluid to drain. In the MRI from back in July (right) you can see that the fluid was draining really well.
This most recent MRI looked a little different.
This is a comparison of my MRI from July (left) and my MRI from Sunday (right). As you can see, the MRI from Sunday shows the tumor has actually shrunk (2mm) and the change in coloration shows that it’s dying. However, in this image you can see how the fluid pools are starting to fill up again.
The news the tumor has shrunk is great! It’s not as great to hear the fluid pools are filling up again, but that does happen. There are three possible treatment options for the fluid buildup. The first is to have another procedure in which the surgeon would just make another drain like they had done in my original surgery. However, my doctor’s don’t think this is the best option because there’s always the possibility the same thing (fluid buildup) will happen again. The next option is to put in a shunt. A shunt is a little device placed on my skull, under my skin. A tube is placed in the fluid pools of my head and then it runs through the shunt and down into my stomach. The idea is to take the extra fluid and relocate it. The third option is to do nothing, and evidently this is what the team, my parents, and I chose. As of right now, there’s no reason to believe that pressure and fluid is going to continue to build. The pressure might just relive itself and there would be no reason to have a shunt. We decided that we would wait until my next MRI in another three months and than see if there’s something that needs to be done.
As this whole conversation was going on we were beginning to meet with Dr. A to get my eyes checked out. Everything was pretty routine. It started with a visual acuity test and then a visual field test. Both came back really positively. Then I met with Dr. A who looked into the back of my eyes before giving me dilating drops.
When he came back twenty minutes later he looked into my eyes again and than I went to do some more tests. The first of those tests wasn’t even a test. It was an image to look at the retinal nerve in my eye. With the dilating drops they were able to take images that were the size of 200µm, which is equal to 0.00002 of a centimeter.
My retinal nerve. The length of this image is 0.00002 centimeters
Here you can see the doctor taking the photos of my eyes and the retinal nerve.
Dr. A thought my eyes looked great. However, there was some retinal swelling he wasn’t sure about. He said that honestly it could be nothing. Just incase, I’m going to see him again in two months.
(1:00pm) Next, we arrived back at the oncology suite where I almost immediately began my premeds and infusions. One of my favorite doctors, Dr. R, came to talk with my dad and I. Basically, he reinforced the idea that it’s important to keep an eye out for things like headaches, vomiting and fatigue because those are all signs of increased signs of pressure. The whole point of monitoring the pressure is to protect my eyes and brain but to also see if I need a shunt. He asked me to keep a journal of when I have headaches, which I’ll definitely be doing. Dr. R also referred us to the neuro-surgery team just so that we could hear a little more from them about the logistics of the procedure and so that if something does need to be done then we have a connection.
Afterwards, I did my normal infusions. Like always, the Ativan put me straight to sleep and when I woke up everything was done.
(4:00pm) Arrive back home! What a long day!
Thanks to everyone following my journey. If you have any questions, please let me know.
-Josh
Josh's Journey 
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