Midline Shift Update

Hello! I wrote this email to family and friends about a week ago -- but wanted to keep everyone updated on what's going on with Nathan...

We came down to UAB yesterday (3/22) for his regular infusion. On the way down, Nathan was complaining about tremors in his hands and face. He couldn't smile or close his eyes without his face trembling, but he felt normal-- other than that. When we got to UAB yesterday, Nathan told Dr. Saleh (clinical trial doctor) about these symptoms. He was a little concerned, so he suggested we have an MRI done today to see if there was fluid buildup causing these tremors and partial seizures (he had two episodes while we were in France). Nathan had the MRI at 8am this morning.

So, the results showed MAJOR fluid buildup in his tumor cavity. There was so much that it was causing a midline shift. A midline shift is the shift of the brain past its center line. The fluid was pressing into his right hemisphere of his brain, causing all of these issues from the pressure. Here's a picture of his most recent MRI (taken today -March 23rd). You can see his tumor cavity (filled with fluid) and how it's creating that midline shift. I posted a picture of what a normal brain's midline is supposed to look like vs. Nathan's brain:

        

So, you can see how big his tumor cavity is and how much the fluid is pushing the cavity over to the other side of his brain. To fix this problem, they drained his Ommaya reservoir. They stuck a needled into the mushroom shaped reservoir in his brain, and sucked 20 cc of fluid out. Nathan didn't seem phased at all. I, on the other hand, almost passed out. Seeing that is not for the faint-hearted....

Here's a picture of what 20 CCs of fluid looks like...I put a pen next to the tube for reference. Sorry if this is TMI!

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For another point of reference, they removed 60cc (3X of what's in the picture) of fluid from his cavity during his surgery in January. They only removed 20cc this time, because they were worried about taking too much out at one time and having him suffer from side effects from his brain returning to its normal state, as it decompresses. They weren't worried as much during his surgery when they removed so much because he was under anesthesia, surrounded by a team of doctors, and would be in recovery for a few days. So, they suggested that we come back each week (for two more weeks) and they'll removed 20cc next week and 20cc the following week to completely drain it little by little. 

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​As for the results of the MRI...mostly fluid (obviously). The radiologist said that a nodular area on his regrowth looked worse, but our Neuro Surgeon (Dr. Riley) and our Neuro Oncologist (Dr. Nabors) didn't necessarily agree with the radiologist. They believe that all of this fluid is creating pressure on that nodular area and causing it to look worse than it is. So, Dr. Nabors wants to drain all of this fluid and have another MRI to get a better baseline, and we'll do that in about 3 weeks and see what's really gong on in that area. Dr. Nabors also wants to hold off on his infusions until they get a better idea of what's going on, too. Dr. Riley was a little concerned about Nathan's running (thinking that the blood in the fluid was coming from hemorrhages from running)...but neither doctor believes that it's bad enough to take running away from Nathan. They gave him a green light for the Boston marathon!

So, that's where we are at the moment... I hope all of this makes sense! 

Thanks for keeping up!

Love you all,
Elizabeth

Update as of 3/30:

-We went to UAB yesterday for the day so Dr. Saleh could drain 20cc of fluid from his reservoir. Everything went well! We were in Birmingham for less than 2 hours - so it was just a quick trip. We'll go back next Wednesday so they can drain the last bit of fluid, and hopefully Nathan will feel much better once his brain decompresses back to a "normal" state. He will have the MRI the week after he gets the last 20cc of fluid drained.