What If I Go To Sleep And Don’t Wake Up?

Chase settled a little further into his pillow as I tucked the sheets up under his chin, just the way he liked it. He had been laughing a second earlier and it suddenly changed to a whimper. “I’m scared . . .”

I tousled the fuzzy hair on his smooth head, “It’s going to be okay, sweet boy.”

He twisted slightly in the sheets as if trying to physically escape a thought. “But Mom, what if I go to sleep and I don’t wake up?”

I hugged him close and promised him that wouldn’t happen – not because I knew it to be true, but because I desperately prayed it so. How the old soul questions from a young body twist at my heart and mind.

It takes four people to hold and distract Chase while the needle is placed in his arm.
It takes four people to hold and distract Chase while the needle is placed in his arm.

Twelve too short hours later, after fourteen hours of fasting and four attempts to place an IV in his under-hydrated veins, he fought the medication as it sought to take hold, pulling his head off the hospital bed to draw breath against the impending sleep even to the point that he nearly choked. His eyes closed and he fought them open once again. His voice was a hushed whisper as if even opening his lips to form words took too much energy. “Mom, I’m going to miss you. Will you come back to me?” The fear in his eyes was still visible in the blank glaze of the pre-anesthesia prescriptions.  And then his chest heaved in a gigantic sigh, and he surrendered.  And I stood in the bay next to Bob, watching nurses and doctors prepare to load his small body into the colossal machine until the automated entrance door closed, separating all of us once again.

We don't like needles . . .
We don’t like needles . . .

Yet another MRI . . .

Today marked Chase’s first MRI in four months and the first one since his diagnosis that I haven’t posted about before it occurred. It was traumatic as it always is and for a moment after the holidays and the busyness and burnout, I lost the ability and desire to put it into words. At some point, it feels like we run out of new ways to say “this is hard” and “please pray”. Every time he passes out and we’re left standing in a room, every last time we say goodbye, it tears at my heart and the weeping soul cry of it all is that we weren’t meant for these kind of things.

It’s hard now, and it’ll probably be equally difficult when we do it all again in three or four months or possibly sooner with an impending eye surgery. And wow, is my weakness and lack of faith on the surface in these moments when I stand separated from Chase and consider doing it all again. We never, ever outgrow the need for moment by moment grace, no matter the circumstance.

Sleeping off the medicines post-scan. He's awake, but was too tired to respond to anything - even a picture.
Sleeping off the medicines post-scan. He’s awake, but was too tired to respond to anything – even a picture.

Oh, but I’m so thankful to be able to bring you the hard and the good all in one, for within a few hours of the nearly two hour scan and recovery, we met with Chase’s neurosurgeon and learned that preliminary results showed negligible growth in the tumor site. Of course, we wait on the final consensus of the other teams and tumor board, but we are so blessed to share that at this point, Chase is stable

Moment by moment.

Weeping may tarry for the night, but joy comes with the morning. Psalm 30:5b

Post-procedure had Teddy Grahams - the best way to break a fast, of course :)
Post-procedure had Teddy Grahams – the best way to break a fast, of course 🙂

Stable

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia
In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth.  However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…

Removing the painful IV
Removing the painful IV

This morning, we received the second and final call.  The official word is “stable” on all fronts!

There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged.  We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.

Taking vitals in post op recovery - and getting to eat for the first time in 9 hours!
Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!

Praising God in awe.   Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.

Thank you again for your prayer and encouragement as we take this…

Moment by moment.

In the car, on the way home. A long day for a very brave boy.
In the car, on the way home. A long day for a very brave boy.