Answers

I'm actually glad that I posted yesterday.  I will be able to read it back at some point and remember just how panicked and devastated I was in that moment.

 

I wasn't expecting to get many answers at the appointment today, but we did.  I'll try to explain the situation the best I can, but there's a lot of information, and I'm hoping I have it all right!

 

Dr. Colman reviewed the MRI with us.  He explained and showed us the definite change and activity in the brain.  There was a LOT of swelling, it seemed to cover pretty much the entire side of the brain.  He said that the swelling was the reason for all of his cognitive and physical issues.  He said the swelling is now affecting many different areas of the brain, which is causing everything Jared has been going through.  There is some new activity, and it's mostly in the frontal lobe of the left side of his brain.  He says that he's not convinced that the increased activity is tumor, because it looks more broken up than solid, and there isn't really the bright ring around it that he would expect, and that in many aspects of the MRI, it actually showed improvement where he'd expect it to be worse if it were tumor.  But he can't be certain without going in through surgery.

 

Here's the problem.  We've got to get the swelling under control or it's going to cause permanent damage, and the steroids aren't doing it.  If Dr. Colman was certain that the new activity was dead tissue, he would give him a drug called Avastin, and it would take care of it.  If the new activity is tumor or cancer, the Avastin would be the wrong thing to do because it would cause future issues.  So he kind of needs some information (from surgery) to know how to go forward.  So surgery in the immediate future seems to be the plan.

 

Here's another issue:  They can scrape out some tissue in the frontal lobe where the new activity is to get a sample without much problem, which would seem like the easiest solution.  But that very well might be necrosis, where the initial area might have tumor.

 

When the neurosurgeon came in, I told him my concern, and he said he was having the same thoughts before coming in the room.  Is it going to be more beneficial overall to get a sample of the tissue in the frontal lobe, or to actually go into the other, more risky area to get the more-conclusive answers?  I told him we had discussed that we were fine with going into the more risky area as long as the surgery was done while he was awake, in which case they could see if they were causing permanent damage to the right side (physically).  He said that he didn't think Jared would need to be awake, and that there are ways to stimulate the hand during surgery to see if it is causing a reaction (which is usually more effective than someone being awake anyway).

 

So the plan for now is that they are going to discuss the options at their board meeting tomorrow and let us know what they've all concluded.  But it sounds like surgery is pretty definite, probably the first part of next week.  The question is where they are going to "dig."  The neurosurgeon also acted like he could do some extensive mapping of the brain before surgery that would avoid problems. 

 

I feel so much more hopeful right now, today, that it hasn't really crossed my mind that we could still end up with the same devastating news following next week's surgery.  But I'm not going to allow myself to go there.

 

Another thing we talked about to the PA - he told us that if this does happen to be tumor regrowth, they will probably request a sample of the original tumor to analyze it and see if this was a mis-diagnosis because things just aren't going as well as they would've expected with his type of Glioblastoma.  In the back of my mind, I have always questioned the diagnosis.  But in all those months of questioning, it hadn't ever occurred to me that the diagnosis might actually be WORSE than what we were originally told!  But the PA said that if they had a sample of the tumor, they could analyze it themselves and see if maybe he qualified for some experimental stuff they were doing at Huntsman.  So that is positive news.  If Jared hasn't responded to standard treatment, we've GOT to try something else, and in my research there wasn't much else!  So this at least gives us hope that there might be something different that might work for him. 

 

One more side note: (yes, there was a LOT of info!)  The neurosurgeon did say that all of this swelling indicates that his body is at least reacting to the radiosurgery.  That means it's fighting.  He said he is a lot more concerned with a person that doesn't show any reaction at all.  It means the body isn't fighting.

 

So overall, I feel better today.  Actually, I feel much better today.  There is still hope that all of his issues are NOT permanent, there's still hope that this isn't tumor re-growth, and there's still a slight chance of hope that the first one wasn't re-growth, either.  So we have hope!  And that will be enough to get me through this week of waiting.

And now I need to go and prepare another big birthday party for a sweet little thing that turned TWO today!  But today I won't have to fake the smile!

Happy Birthday, Miss Averie!

Definitely reason to smile!