Tag Archives: trust

Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room.  This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close.  His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?…  They come with heartbreaking regularity and the answers are always the same.  In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink.  They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not.  My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good.  Always.

So today, hear Chase.  He’s about 24 hours away from a big MRI and he’s scared.  He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure.  This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it.  He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.”  That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day.  Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI. 

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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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]

That Time We Went To The Hospital…

These last two weeks have seemed a little like a single long day that wouldn’t quit!  As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us.  When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.

It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] .  We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn.  …so, back to the hospital we went.

A lumen repair kit...aka: needle salvation

A lumen repair kit…aka: needle salvation

Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”

Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged.  Until Tuesday.  When we went back in for blood and platelet transfusions and the line repair.  We left that same night and managed to stay out until…Wednesday night.  A whole 24 hours.  At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.

We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night.  I should also note that we’ve become very close with the vascular access team.  On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest.  …which did indeed turn out to be the case.

The malfunctioning repair

The malfunctioning repair

On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital.  Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing.  After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.

Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm).  For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle.  If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles.  Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.

Proudly displaying his IV - "You should see the other guy!"

Proudly displaying his IV – “You should see the other guys!”

It took four people and two tries, but they finally got an IV in Chase’s hand.  And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.

Which summarily ended our two-week long day.

You can’t make this stuff up.

Moment by ever-changing moment.

The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9

Sleeping peacefully in pre-op moments before he was taken back to the OR

Sleeping peacefully in pre-op moments before he was taken back to the OR

Day One: A Reflection

With his backpack and IV bag preparing to leave in the early morning…

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…).

Snug on the ride home; sleeping off the anesthesia

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.

Rubbing lotion on his head and back to protect against burns

Preparing for a Long Haul…

“He who dwells in the shelter of the Most High
Will abide in the shadow of the Almighty.
I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.” — Psalm 91:1-2

Chase went into his surgery this morning at about 7:45, and the surgery went quickly and well.  The surgeon, Dr. Alden, was able to remove all of the tumor that we’d seen on the MRI last night.

However, the initial results of the pathology that was sent in during his surgery showed that the tumor is malignant, which means that it’s an aggressive tumor which gets bigger quicker than a benign tumor, and may spread more quickly.  Also, Dr. Alden saw several smaller (“spore-like”) tumors in the sub-arachnoid space of the brain. 

The sub-arachnoid space of the brain.

Since the pathology report showed that the tumor is malignant, the doctors are also now more concerned about some gray coloring that they’d seen on the MRI on Chase’s spine.  They think that the tumor may have spread down into his spinal column.

So, where do we go from here?  That’s the big question that’s been on Ellie and my mind.

Well, the next step is the full pathology report.  The full report will tell the doctors exactly what kind of tumor it is (there are a bunch of types of malignant tumors), which will tell them how aggressive the tumor is, and what kind of treatment is needed.

What is for certain is that Chase will need to do some kind of chemotherapy for the next four or so months, and then he will probably need to do radiation therapy.  This may continue for some time, depending on the type of cancer it is.

This is going to be a long process for Chase.  We appreciate all of the prayers for us and for Chase, and all of the phone calls, texts, Facebook messages, and tweets that people have been showering on us.  We are so grateful for all of our family and friends that have been so encouraging to us in every way.

Chase after his surgery, with his awesome scar.