I cannot even believe I am making this update. I really dread writing these because once I put it out for the public, it makes everything that much more real and I do NOT want this to be our reality.

This was supposed to be a celebratory update to say that we were getting discharged after 48 hours in the ICU.  It should have been an exciting journal entry to tell you we would be able to fly back home just in time for Tenley's (Conor's big sister) birthday on Tuesday.  Instead it feels like we are on the other side of a cruel joke.

Tomorrow afternoon, Conor will go back into the operating room for another surgery.  From the words of my 6 year old daughter when I shared the news, "But how is that even possible? She just got the boo boo out."  I've been trying to figure that out as well.  I told you this seems like a cruel joke, but it isn't.

Here was our day...
This morning we got the news that Conor was going to be discharged because of his amazing recovery.  We were so sure he would be out of the hospital that we rescheduled our flights home for tomorrow.  We cancelled my mom, Ella and Tenley's flights to Boston (our original plan was to fly the girls here to celebrate Tenley's birthday together).  We were all set and packing up, when his surgeon came into our room to go over the scans he had yesterday. The scan included Conor's brain and spine.  It is typical protocol to get a scan a day after surgery to look for any swelling, etc.  The spine was added in because we needed the official report that it remained clear.  Thankfully, his spine was clear, but his brain was not.  Suddenly there was another spot in the cerebellum that lit up with contrast.  When we look back to his scans in March and May, there is possible evidence that it was there, but not enough to make any conclusions.  Either way, in 11 days it has grown from virtually nothing to 3mmx7mm.  This is the size of a pea and while it doesn't sound like much, it is extremely fast growth for 11 days.  Enough to worry our surgeon.  She gave us a couple options.  Go home, wait, rescan in 2 weeks and see what happens.  Or go back in and get it out.  Neither feel like great options. But all of our gut reactions were the same.  We need her to get back in and remove this so that we can find out exactly what it is, as its characteristics on the scan are difficult to interpret.

She gave us three possible scenarios for what this could be...I'll share them in order of which we would hope it would be.
1) Radiation necrosis - basically dead cells from previous radiation therapy 
2) Recurrent Ependymoma - the same cancer that we've been fighting, it's just moved into the cerebellum, which is close to the original tumor resection cavity
3) Radiation induced glioma - this is the absolute WORST case scenario, one that would be devastating in so many ways. I'm still sick to my stomach just thinking about it because it would drastically change things.

So that's where we're at right now.  Are there silver linings?  Yes, I'm sure I can find them if I look close enough... but right now I don't even want to.  I just want to catch a break.  How many more intense ups and downs can our hearts endure?  We should be celebrating Conor leaving the hospital not convincing him to stay a few more days so we can get more cancer out.

He's been the best sport about everything.  He only asked for one more dinosaur.  I cannot tell you how hard it is to look into his pure eyes, knowing what we have to put him through again.  As a parent, it is so painful.  I feel like I am betraying him even though we are only trying to protect him from this evil disease.

As for tomorrow's timeline, we really don't know exactly what to expect.  We just know he can't eat after 4 am and he will go in sometime in the afternoon. I will likely not update right after the surgery.  Instead I would like to wait until we know exactly what this is inside his brain because it's just too emotional for me.  I'm no longer terrified of the surgery itself. I have all of the faith that surgery will go well.  It's what she will find inside that scares me.