Monthly Archives: January 2015

It’s Only A Side Effect

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The pieces lie in our hands…

We’ve talked about this.  We are the lucky ones…the ones still breathing.

The pieces are broken and jagged, like a shattered vase, but…he lives.

Many are the times we’ve cried out for wisdom and wandered the farthest regions of our motives in search of the right and wrong in saving treatments that cause great damage.  And we’ve steeled our hearts that if our hope comes true – if, by some means, some day, better cures are found – they will have passed too late for Chase.  The seeds of damage were sewn when we opted to save his life.  We ask ourselves almost every day… are we ready for this?  …whatever this looks like?  …the fruit of our decisions?

Absolutely not.  By grace alone, we stand.

Would we go back?

 Absolutely not.  Ready or not; no regrets.  The pieces are jagged and some are ugly and sad, but we’ve steeled our hearts and have set to fixing the vessel and it never ceases to amaze us how much beauty there can be around the broken.

On Wednesday, we heard our very good news, but that was not the only appointment we had.  We also sat with another doctor.  One who monitors things like growth, organs and hormones.  Chase lay flat and still while she measured and he held his arms out like a bird while she measured more and he stayed patient as she checked everything and we talked family history back into the generations.

Even though his weight is in keeping with other children his age, it’s starting to show already: Chase’s height is having trouble keeping up.  His tiny black dot was still on the growth charts before our eyes, but just barely…like someone clinging to a precipice by their fingertips.  How much longer until it falls off completely?  Nobody knows.

The consultation came down to blood for now.  Tests and blood.  More decisions will come in the next year or two.  Decisions that bring with them risk of secondary cancer.  This is the cost of trying to grow up when your spine was radiated.

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Our hearts are heavy with these things some days, still, even in the heaviest of moments; no regrets.  We set to mending the pieces because it’s only a side effect and some day, Chase will be better than better.  He will be perfect.  In the meantime, we’ll use the pieces to reflect the light.

Moment by moment.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.  1 Corinthians 13:12
And he who was seated on the throne said, “Behold, I am making all things new.”  Revelation 21:5a
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Good

In pre-op with Mrs. Schneider

In pre-op with Mrs. Schneider

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in…  Good news.  The very best we could have hoped for!  These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects.  What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief.  Oh, but what relief

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this...

In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase?  He’s so funny… his hardest part was done yesterday when he woke up in post-op.  The needle was removed and he could eat and that was it.  And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along.  This boy, he takes it as it comes.  And so will we.  Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news…  The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase with Nurse Jo in post-op after his scan

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.