On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road.  Chase’s first day of therapies.  A new building, new people, new things to be learned…the start of a new chapter.  And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead?  Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel.  photo 2 (1)“Mommy? Where are we?  This is not the road to my hospital.”  For this is how Chase tells direction.  There is the road that leads to his hospital and then there is every other road ever made.  I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard.  Then; “But Mom, are we late?”

“No, Chase.  We aren’t late.  We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.”  I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?  

Finally, this; “Chase, do you trust me?  I know this road and I can see the clock. I know where we’re going and I know that we’re not late.  You don’t know this road, but I do.  I’ve driven on it before and I know where it goes.  Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock.  You can; but I cannot.”  

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn.  He tells me that even though I don’t know the road, He does.  He knows where it goes and what’s along the way.  He knows the timing of it and how it will take me to places that will be hard but will make me stronger.  And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

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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.

Open Hands

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The shadow has descended again and I’ve found myself unable to write because of it.  Three whole months have passed like the snap of a finger and once again, we stand in front of the two doors: the next MRI is in less than 48 hours.

Technically, the shadow of relapse is always with us, but we feel it ever so strongly the week before the MRI.  I wasn’t going to write because I’ve had no words -only fears and fighting fears- and I’ve wanted to be silent in my thoughts and prayers until after the results are known.  However, today, I was reminded to open my hands.  To relinquish again the dread of the unknown to the One who knows.

So, tonight, I finally sit and write.  I still fear much and fight the fear, but today, I opened by hands – a thing I haven’t done in too long.  I needed this reminder that Chase is not ours to keep.  In fact, none of our precious littles are.  They are our entrusted treasures and we are their stewards.  We’ve gathered them around us in front of the two doors and we wait… with open hands.

Moment by moment. 

The earth is the Lord’s, and everything in it, the world, and all who live in it.  Psalm 24:1 [NIV]

Abundant In Power

One year ago tonight, I sat on the side of our home church sanctuary, watching Darcy and Aidan finish their Awana year.  In my arms lay a limp and sometimes whimpering Chase.  It was the tenth day since his last chemo cycle and his counts were obviously plummeting; but masked, attached to his IV, too weak to stand and in strong discomfort, he refused to leave until he’d heard Darcy and Aidan’s names read for their awards.

When Darcy’s name was called at long last (as Aidan’s had been called several minutes earlier), he sighed, fussed, and begged to go home – his little body starting to burn with fever.  Within an hour, we’d be one our way to the hospital and late this night a year ago, he’d be admitted for many days to fight infection and the chemo toll.

I’ve been thinking of those year ago moments with him in my arms all day today.  And now, one year later, THIS…

Great is our Lord and abundant in power. Psalm 147:5

Abundant indeed that he who should have no memory can stand and speak, having memorized these words.  I stand in awe

Moment by moment.

 

To Channel The Fight: Follow Up

The brothers eat gummies and pick late night movies to help keep Chase awake
The brothers eat gummies and pick late night movies to help keep Chase awake

Yesterday’s EEG -a test we were told would take 4-6 hours- lasted a full 8 hours.

This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.
This face. For an easily over-stimulated child, the wet/cold electrodes all over his head were very difficult at first.

For Chase, who was being video-monitored (in addition to the electrodes covering his head), this meant about a 2 foot range of motion on the bed…for 8 full hours.

Chase.  Being still.  For 8 hours.  Ha.

Sleeping peacefully. An answer to prayer as sleep is an important component of the test.
Sleeping peacefully. An answer to prayer as sleep is an important component of the test.

Actually, he did incredibly well considering the circumstances.  It was a grueling day for him and he managed it with a great attitude.

There are few things that a lollipop and coloring time won't make better...even a head full of electrodes. :)
There are few things that a lollipop and coloring time won’t make better…even a head full of electrodes. 🙂

We haven’t done this test since the initial days of his diagnosis – haven’t kept him up late into the night since two days before we found out he had a tumor and I was amazed how going through the ritual again brought back the memories of those sleep deprived, scared hours when we first felt the dread of some unknown thing being very wrong with our little boy.  And then the memories passed and we had a great sense of peace and even joy in the middle of the long night and day.

We hope to hear some results within the week and will be able to discuss a plan of action with the epilepsy specialist in early April.  Thank you for your prayers.

Moment by moment.