Category: Chase

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

Of Counts And ECHOs And Little Victories

Thank you so much for your prayers this weekend! We were informed yesterday morning that Chase’s counts had “come back with a vengeance” (ie: his numbers looked really good) and he was admitted for chemo shortly before lunch – residual cold symptoms not withstanding.
Here is a picture from the afternoon…he’s getting another ECHO exam to monitor his heart for chemo damage, but he’s smiling and giving a thumbs up, which I love. Getting an ECHO without screaming is a huge victory for Chase. His skin is so chemo sensitive that the feel of wet or cold is often more than he can handle. The gel used for the exam makes it very difficult for him to be still and stay calm. So proud of him for really working at it yesterday!
And with that, the second to last chemo cycle is well underway.
Moment by moment.

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Two More

Chase’s counts are finally recovering from his last round of chemo!  Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday.  His levels aren’t exactly where they should be, but are very close.  It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week.  We don’t hope this because we love chemo, but because Chase only has two chemo cycles left!  …and then he’s done!!

We would so appreciate your prayers as these last rounds are, in many ways, the most difficult.  The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.

Moment by moment.

My darling Chase
My darling Chase

 

The Beautiful Ugly

“Part of every misery is, so to speak, the misery’s shadow or
reflection: the fact that you don’t merely suffer but have to keep on
thinking about the fact that you suffer.” C.S. Lewis

September is Pediatric Cancer Awareness month.  It’s a time when we find every possible way to say that most cancer babies suffer and many die horribly, and if by some miracle, they escape that terminal diagnosis; they’re often scarred for the rest of their lives in every imaginable way.  To say that there’s not enough research and there’s not enough money and there’s not enough action.  Not nearly enough.  Not ever enough.

It’s almost impossible to turn around this month without having the spectre loom and stare back at you through the eyes of a small child gone long before siblings or school or marriage or children of their own.  In September, this dark, middle-of-the-night thought for the parents of a living cancer child becomes a large and constant shadow as we actively stare into the eye of the storm for a whole month of days.  Oh, it’s there every other day of the year, but in this month of months, we set aside the business and life that crowds it out and stare it down in all it’s wretchedness.

There are many days I’ve wanted to write, but it’s difficult to write about the truly awful moments because there is no easy way to articulate what it feels like to the human heart to restrain the child you bore and swore to protect as hands breach his skin with needles and tubes and he screams and begs you to stop, but you can’t.  There is no easy way to describe the helplessness of walking down a hospital hallway and seeing clusters of white coats and scrubs in huddled consult while family members sob with their heads in their hands and the next week; an empty room, or of watching a three year old being wheeled away from you by an anesthesia team and hearing his cries fighting through the haze of drugs that slow his mind because he won’t remember in an hour, but right now, he knows they’re taking him away and he’s scared even though he’s assured you many times not to worry because he’s going to be brave.  Seared into my brain, these moments and many others like them are so dark that my heart physically hurts and the only true articulation of the emotion is a gut-wrenching scream.

In light of this, is it ever possible to be happy…no, find joy after you hear the words “There’s a large mass“?

I believe with all my heart that it is!  If there is no joy to be found and shared, then there is no purpose in our suffering and we live in needless agony without end.

My ultimate joy is the knowledge that a day is coming when there will be no more tears or pain and death won’t exist anymore.   A day when women won’t cry with empty arms and children won’t know the sound of broken, powerless adult sobs next to their hospital beds.

And until that day of no more, I am given small treasures as I walk through the ugly.  The moment Chase laughs and jokes with his doctors, the time he grabs the nurse’s arm and kisses it, the times I lean down to tuck him in and he tells me he loves me and that I’m his favorite mommy, the moments I watch him walk and talk and run and eat and remember after being told that he may never do those again.  All of these moments are beautiful and undeserved treasures in the midst of the shadows, and sometimes, we even capture them on camera, so that someday, when we wake from this blur, we’ll look back and remember that there were moments of beautiful.

I am not naive.  My taking joy in those moments in no way indicates a lack of understanding of the cancer horror.  My response is not static or stoic.  I feel the pain deeply, but I must choose the joy because there is purpose in our suffering and that is what I pray to continue to seek every day…

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

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