Monthly Archives: October 2013

Come With Us: The Last Spinal Tap

I’ve written many times about what it looks like to be with Chase as he goes into surgery, and now, come with us, if you will…

The pre-op and the conversations, the moment they take him away from us, the post-op exams and the deep, deep sleep…  And through it all, Chase’s incredible bravery.

Come with us for the 16th and last spinal tap*…

Moment by moment.

[music: Sleeping at Last, “Next To Me“]

*took place, Monday, October 14, 2013

The End Of A Season

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Day 7 in the chemo cycle: Chase is well enough to have moments of great energy, but fragile enough to need rest and protection.  He couldn’t go to church with the  siblings, so, still in his pajamas, bundled in a brother’s fleece (because it reminds him of Shaun the Sheep) and an aunt’s hat, we walked a few minutes in the cool, crisp morning.

As the leaves crunched under our feet and dew glistened on the leaves, I saw again the beauty in this end of a season…

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Sovereign in my greatest joy, sovereign in my deepest cry…

With me in the dark, with me at the dawn…

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In Your everlasting arms, all the pieces of my life from beginning to the end…

I can trust you.

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In your never failing love, You work everything for good…

God, whatever comes my way, I will trust you.*

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Have I not commanded you? Be strong and courageous. Do not be dismayed, for the Lord your God is with you wherever you go.    Joshua 1:9

The End of a Season

The End of a Season

Lyrics: Chris Tomlin, “Sovereign”

 

Just A Picture

So much to love… An arm around a brother, a sweet bald head, a cape that tells me something I already know… :)

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Fourteen Months

Once again, I sit, wrapped in blankets on the hospital couch, watching the darkness turn slowly to dawn over the city, thinking through the day ahead.

Just like the morning of the brain surgery…

Just like countless other mornings...

My thoughts are interrupted as Chase stirs and cries out; a small reminder that he’s under the chemo and today’s end is not really the end.

But I sit and pray that God would allow me to weigh this moment, this day and remember it always. Today, it will be finished.

Finished.

Fourteen months to the day, this grueling, “not advisable for small children“, “hardest thing you’ll do“, “best chance of survival” chemo therapy plan will be done.

As I’ve written over those fourteen months, there have been many times I’ve been next to the hospital bed. In those moments, we process and weep in our parent hearts…but it’s he, Chase, who has had to physically bear the weight of fighting for his life! And fight he has. The numbers alone speak of the battles…

The inpatient days, the days we were admitted number 129. This number does not include ER visits, MRI days, clinic days or all the other days spent in the infusion center of the hospital for chemo and blood. No, the number of days Chase lay his head down for the night alone in this place are 129. Were I to add the others, the number would close to double.
There have been 37 bags of platelets hung and 26 of red blood to date (there will be more…). There were 33 days of radiation and 15 central line placements, repairs or removals. There have been 9 different chemo therapy drugs, sometimes as many as 5 at a time and 16 spinal taps. And I could not count the sedations, labs, ECHO tests, audiology exams and all the other little things that accompany these numbers. There have been too many.

If I know anything of my son and this disease, this will not be the last time I sit here in the dawn, and many of the numbers I just wrote will continue to grow even after the official treatment stops, but for right now, I sit, and I pray that God allows me to remember this moment always because today, it will be finished.

God, we are in your hands and in that we rest!

Moment by moment.

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Just When You Think You Know…

“So, Chase’s counts are back… Are you sitting down?”

The moment of silence stretched out as the sick feeling in my stomach took firm root…she realized where my mind had gone and quickly filled the gap: “In a good way!  It’s a good thing!

Chase’s Thursday labs came back higher and better than they’ve been in weeks…dare I even say months?  They were in fact so high, that his team wondered if I’d forgotten to take him off his daily cell regeneration injections (which cause a false high in the counts) because his white count alone was truly remarkable.

After expressing my shock and joy, I had to ask: “But, how?  How is this even possible?  …when he’s this far and his body is so depleted ...how is it possible to have counts this high?”

She laughed and said that she didn’t know what to tell me.  Maybe it was that these last chemo rounds weren’t as harsh as the induction last Fall, or maybe it was because he’s healthy (with no colds or line infections) but truly, there was “no medical explanation” for his current numbers.

I got off the call with the phrase “no nedical explanation” ringing in my ears.  Of course.  Why not?  That sounded right up Chase’s alley… This is why we so often say “It’s Chase“: because we frequently see his team and hospital staff confounded by Chase’s stubborn tenacity and well being in the face of what they know this cancer can and should look like in a small child.

But this particular day…this phrase…this was different.   This was a reminder tailored for my heart.

You see, the end of treatment is incredibly scary.  We leave our secure second home and walk back into the light of day.  We face post-chemo therapies which will several-times-a-week remind us of huge obstacles Chase has to overcome in order to function.  We stop being an active cancer family and start being a passive one living in a world where the majority of people we know assume life goes “back to normal” when chemo ends.

Facing this upcoming change is a middle-of-the-night fear.  Terminal cancer and rushing to the hospital and walking around with a crash kit and never being in one place long enough to make eye contact with life have all become so second nature to me that I hardly remember what living was like before now.

And then the news of Chase’s inexplicably good counts…

Quietly, in my heart, Job 40-42 replayed – God’s challenge to Job in the face of what Job thinks he understands about life.  Similiarly, Chase’s counts burst into the middle of my Thursday afternoon filled with quiet worry… The challenge: “You think you know what his counts should look like now?  You think you know what lies ahead?”

All I could do was marvel as all my pre-concieved vanished like mist in the face of Grace and respond:

“I know that you can do all things, and that no purpose of yours can be thwarted.”  Job 42:2

Moment by moment.

Chase with Daddy at a transfusion last month

Chase with Daddy at a transfusion last month

One More: The Last…

Poison

This afternoon, I received the call I’m always waiting for – the first of the twice weekly lab results.

This afternoon, I received news I’ve been waiting to hear for 14 months – “Chase’s counts are coming back, and quickly.  We’ll repeat labs on Thursday, but barring anything really crazy, he should be ready to restart chemo on Monday. This is it!

This is it.  The last chemo.  The last spinal tap.  The last

A small part of me is choking as I’m writing “the last“.  The part of my brain that reads and absorbs cancer research is screaming “The last?  You know better than that! This cancer is never over!”

But tonight, for now, for next week, it’s the last.

Joy.

I can’t believe we’re actually at this point.  And for all the rest that we have yet to walk, we’ll take it as it comes…

Moment by moment.

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

An Atypical Miracle

“The spinal fluid is still positive.”  

These words washed over me almost a year ago now…weeks before radiation and clear scans.  I stood next to the hospital bed where Chase slept and tried to take it in.  Still?  So much chemo, yet the cancer lived on?  

I turned to the doctor and asked the awful middle-of-the-night question that was always in my head but never, until this moment, on my lips:  “If it doesn’t clear… How does this end?”

She looked at me -perhaps questioning whether I needed to know in that moment- the compassion and concern evident in the lines of her face.  And then she went on to gently explain the last days of this awful brain cancer when every option is exhausted.  Her words gave me an odd comfort.  I had pictured something completely different and felt a tiny relief around the pain in my heart to think that Chase would sleep more and more until he never woke in this life again.  It sounded… peaceful.

On that day, I wept, and I stored her words away for another day that I still pray I never see.

Why share this now?  Because my heart is heavy for the Fair family.  A family of 6 whose darling baby girl, hardly older than Chase, diagnosed with the same cancer, in the same year, having gone through the same treatment… Phoebe… She’s in her eleventh hour.  She’s their atypical miracle and they’re praying for another miracle even now as the veil grows thin.

These are dark things and not for the faint of heart, but I’d so encourage you to take a moment and read what Amey has written.  It is more of the beautiful ugly…the precious pain that draws us nearer to God even as our minds scream “No! This shouldn’t be! Come quickly, Lord Jesus!”

Please join us in praying for the Fair family today.  They wait expectantly…

Moment by moment.

For more information on Phoebe Fair and the Fair family, please visit her mom, Amey’s blog: www.anatypicalmiracle.com

**On Saturday, October 5th, at 10:30pm, the soul of Phoebe Fair took flight. Home with Jesus forever. -MbM-**