I’ve had more than a few people ask how Declan went from doing great to, well not. From only tumor remnants…to too numerous to count. So let me try to explain as best I can.
I just read back to see how I wrote about the last few weeks, to wrap my head around how I told you. I mean there is a decent amount of hospital lingo Stan and I became accustomed to but I think I kept you pretty close to where we were.
So that week at home was just wonderful…granted Will and Brady were not there but it was kind of nice to have both Declan and Cole together, alone, to spend that one on one time together. To enjoy the kinds of things they should have been…a shared walk in the sun.
It was Saturday when we first noticed that Declan’s eyelids were drooping a little. It wasn’t jaw droppingly alarming because when he was first diagnosed it was his gaze which was cast down, not just his eyelids. His temperament seemed find…no changes in his behavior i.e. not cranky, lethargic or over all off his game. He seemed fine so we watched it overnight. By the next day it became apparent something wasn’t right as his eyelids were now at half mast…definitely ER worthy and he was beginning to become restless. As you know by the time we were in the ER it was very apparent something was wrong and so we learned about the enlarged 4th ventricle.
Surgery was scheduled to repair the ventricle and investigate the possible new lesion/tumor. Then the second surgery to repair what was believed to be a clogged shunt tubing which was causing the second 4th ventricle enlargement. It was before this surgery where the question of ‘something’ else at the top of the spine was noted which was what ordered the full head to tailbone MRI to assess his spine as well. It was this final MRI which revealed the cancer has returned to his spine…it had returned in such a manner that the tumors were “too numerous to count”. We asked to see the MRI…where the spinal cord should show up black on the films, it was almost all gray or tumor. It was crushing. I am still in awe of Declan and how he showed no outward sign of the tumor literally choking his spinal cord. I mean I guess it was causing or perhaps contributing to the issues with the 4th ventricle but that wasn’t immediately apparent or discussed.
So again, how? Well, the last MRI Declan had from head to tail was June 2nd in Houston. In that MRI, there was no evidence of tumor in his spine…nothing. It was why the decision to not radiate his spine was made. At that point, there was nothing there. During radiation there is no need to do any exploratory MRIs as the radiation can actually make things look worse initially and in general they really don’t like doing them because of the extra radiation to a patient, especially children…I always found that to be so odd, I mean we’re battling aggressive cancer is that really a concern? I know, I know but it still always made me scratch my head. So there was no need to do any additional MRI’s while in Houston. The only ones we did were related to issues with Declan’s shunt and it was a CT scan and nothing was ever seen. Additionally, every 3 weeks during Declan’s interthecal chemo injections to his spinal fluid; fluid was drawn and tested for cancer cells. No reports ever came back with tumor cells present or it would have been a game changer immediately.
So while the last week was rough from a multiple brain surgery and a new tumor found perspective, we truly did not believe it wasn’t something which could be treated with perhaps a new chemo regime. We were not naive to the serious nature…we’re talking emergency brain surgeries and new things are being found…hence the ‘expectmiracles expectmiracles’ post but we truly were blown away by the news that Declan’s cancer had spread to the point that there was nothing left for us to do but say good bye. It was the combination of the cancer returning with a vengeance and the ventricle enlarging for the 3rd time which really excellerated Declan’s passing.
It’s still mind numbing today to remember that sequence of events but you truly did know what we knew as we came to know it and were punched in the gut like we were.
I hope that helps to shed some light on the speed at which our sweet Declan left our arms.