The life and stories of a cancer ninja
Radiation day #2 started at the radiation building, and then due to a fever, moved to the outpatient oncology office, and then to the local ER, and then to an inpatient room, and then discharged from the local hospital to the special transport team, and finally, taken “sirens and lights” to Chase’s hospital.
My apologies for the run-on sentence. It was a run-on day. Because of the fever, radiation is currently suspended.
Stay tuned for Day #3…
Moment by moment.
One day down, twenty-nine more to go…
I’ve mentioned before how very much I hate separating from Chase before a procedure and today was no exception. I left my unconscious child in a full body mold in the middle of a huge radiation machine, turned my back, and walked away. With this heavy on me, I cried the whole way back down the hall (much to the chagrin of the nurse escorting me, I’m sure…).
This entire radiation decision feels like a step down the path of destruction. The doctors (and we with them) must tear and ravage his body with everything there is in the hope of once and for all eradicating this terrible thing that is greater still than the near deathly salvation they’ll put him through.
And yet…
I thought again today about the words of Psalm 139 and realized, no, this is not a road to destruction, but to perfection!
I thought I had a healthy and perfect baby boy one December afternoon. I still remember the first pink tinge of life effusing his skin as they laid him in my arms. How beautiful he was.
And yet…
My mind cannot fully grasp this, yet my heart cries out that it is true: that December afternoon was but the beginning of a journey to perfection. Chase is only now becoming who his loving Heavenly Father desires him to be!
We don’t know now. But one day we will.
So we will endure that we may be complete. Lacking in nothing. (James 1:2-4)
Moment by moment.
It’s Monday morning and we are in the dawn once again.
Today, Chase begins radiation.
Though I cannot find the words to adequately describe how I feel about this, I know that God has been with us every step of the way and will not leave us now.
Chase, we’ll again see you on the other side.
From the first step on a new path…
Moment by moment.
“There has been no success in curing this cancer without radiation, but we know that there are long term neural and even physical effects from this course of treatment. What do you, as Chase’s parents, think?”
The impossible scenario with the impossible question.
What do we think?
In that moment, I think I wish I’d never walked into the room and never heard of cancer, and brain tumors, and chemo, and…
The reality is that Chase (barring the miracle we never cease to hope for) will begin radiation in a few short weeks. He is an excellent candidate for proton radiation (a “better” type) and our preliminary meetings and planning sessions with the doctors have been very encouraging.
It’s taken me a long time to blog about this scenario and its because I have found it almost impossible to write through being in a room and discussing the crushing reality of your child’s impending mental and physical changes …all the while knowing that these changes are still a lesser damage to him than his cancer.
Then, we leave the room and he’s still our Chase. In many ways, we said goodbye to who and what Chase was the minute we drove into the ambulance bay on that epic Tuesday in July. And at the end of my every thought and emotion on this, I have to come back to this promise…
“For you [God] formed Chase’s inward parts; you knitted him together in his mother’s womb. I praise you, for he is fearfully and wonderfully made. Wonderful are your works; and my soul knows it very well. Chase’s frame was not hidden from you, when he was being made in secret, intricately woven in the depths of the earth. Your eyes saw his unformed substance; and in your book were written, every one of them, the days that were formed for him, when as yet there were none of them.” Psalm 139:13-16 ( personalization added)
Our decision is big, but Jesus is bigger.
Moment by moment…
What do you do when the thing you most feared is suddenly your reality?
Today we got the results of the pathology report, and it doesn’t look good. Chase has an atypical teratoid/rhabdoid tumor (AT/RT), which is a very rare kind of cancer (rare = about 30 new cases per year). Did we really think that Chase was anything other than rare?
The neurosurgeon noticed, on Chase’s original MRI scan, that there was some light-colored shading on his spinal column, which has now been interpreted as the tumor spreading.
It seems like the most likely course of action will be a 51-54 week regiment of chemotherapy and radiation, during which time he will have a treatment every 3 or so weeks in the hospital.
This is hard news to try to process. Am I ready to watch my child go through this? Do I trust that God is sovereign, even over an aggressive malignant tumor? The words (and melody) of a song by Mark Altrogge has been going through my mind today:
Whatever my God ordains is right
In His love I am abiding
I will be still in all He does
And follow where He is guiding
He is my God, though dark my road
He holds me that I shall not fall
And so to Him I leave it all.
Here’s a clip of the song with this verse:
What this looks like, only God knows, but what we do know is that God IS sovereign, and while the tumor is a tragic physical manifestation of the fallenness of mankind, the child is a beautiful manifestation of the image of God, and in this child we have joy.