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

The End Of The Week

I am not sad to see this week end.

The end of chemo is so close that we can practically taste it and the full depth and breadth of all that Chase has been through in the last 14 months seems to settle a little more heavily with each chemo injection.  The week started well with some little victories, but Chase quickly fell under the chemo – getting more tired and more aggressive as the week went on.

I don’t often write about Chase’s aggression…in fact, I can’t think of a time I’ve ever written about it.  It’s a very difficult aspect for me to accept, let alone put into writing.  Chase is a passionate and strong fighter.  I still remember the doctor delivering him and saying “It’s a boy! …and he seems to be holding his head up on his own…wow.”  This, we love.  The pure stubborn defines so much of his cancer fight.  Unfortunately, as it mixes with the brain damage and the treatment toxicity, and is magnified by the constant pain and discomfort, it exhibits itself in screaming, hitting, biting, and kicking.  Frequently.  He’s almost always quick to calm, and is always quickly remorseful, desiring to “make it right” with the person he hurt, showering them with hugs and kisses and telling them he’s sorry and he’ll never do it again, but the raw truth is that the days and weeks when he struggles like this sometimes seem like months and years.  He walks through this intense treatment with more grace and strength than I ever could, but it getting the better of his temper is an honest and almost daily reality and I mention it here so that you can pray for Bob and me as we help him through this.  Pray for us to give him grace while still encouraging him to be quick to hear, slow to speak and slow to anger (James 1:19-20).

Reading with Grandma at 6:00am one morning this week before leaving for the hospital
Reading with Grandma at 6:00am one morning this week before leaving for the hospital

When Chase isn’t being aggressive, he loves interacting with people.  On Monday, as we were waiting in clinic, he saw one of the nurse assistants and after chatting with her for a moment, he informed her that he needed to stay in clinic to see his doctor, but that she could go “find my room and make my bed”.  Luckily, the CNA, besides being an excellent maker of beds, had quite a sense of humor.

This week, I also had a conversation with the amazing woman behind the organization that provided Christmas for our family last year.  She told me that she had gone to the hospital earlier in 2012 and asked them who, in their medical estimation, only had a few months to live and wouldn’t see another Christmas.  Chase was among those named.  Almost a year ago.  I’m in awe of these tiny glimpses of how God completely surpasses what we think we understand to be the course set before us.

But the reality is that facing Chase’s mortality again, and his frustrated aggression, and another week of chemo, and the needs of three other littles have left me physically exhausted and Chase’s on-and-off again elevated temperatures and visibly weakened condition have worn away at what little mental and emotional strength I had left.  I didn’t even want to write because the week was hard and my response to it was often ugly.  I’m staring down a new week beginning and thinking to myself “I barely survived last week! What do you mean there’s another one coming at me?” 

Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:30-31 NIV

This is my answer.  Whatever may pass and whatever lies before me, let me be singing when the evening comes.*

Moment by moment.

*excerpt from 10,000 Reasons; Chase’s favorite song.

Riding the hospital escalator under the whales with Grandpa (lower left corner)
Riding the hospital escalator under the whales with Grandpa (lower left corner)

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