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

August, Part II

Our August continued…
If you missed part I, you can catch up here.
August 18:  “Last night, Chase suddenly started shaking (as if he had the chills) and within half an hour, his temperature went from 99.1 to 102.1.  It was a scary moment for our family.  He was triaged at a local hospital and was released around midnight after an antibiotic since his blood levels were so stable.  We were able to come home and sleep for a few hours before both the local hospital and Lurie started calling…Chase’s blood cultures had grown a bacteria and quickly.  He was admitted to Lurie several hours ago and we are waiting to determine the plan for treatment.  Because of this, his port surgery (scheduled for tomorrow morning) will probably have to wait.  We are thankful to be here and we know this is exactly where we are supposed to be and Chase is overall in a pretty cheerful mood, but we are all experiencing a certain level of “burnout” from all the back and forth and Bob and I are very concerned about all the infections and what role, as his caregivers, we might be playing in them.  Praying for wisdom all around.”
What do you do in the ER at 9:45pm?  Why, play paper airplanes, of course...
What do you do in the ER at 9:45pm? Why, play paper airplanes, of course…

This particular fever and admission were especially difficult as we were still at home and with the other kids when the worst of it really hit him.  Chase has never been that bad at home before and they were very afraid.  For them, the last time they witnessed Chase shaking, it was a seizure and it changed their lives forever.  We were able to talk about it with them and cry a little too.  That’s one of the reasons Bob took the above picture – we needed them to see Chase after his dose of Tylenol and see him sitting up and being Chase again.  We didn’t want their last memory of that night to be one of him shaking uncontrollably.

On August 21, after days of waiting for negative cultures and many, many discusssions of what could be causing the continued infections, we were able to bring Chase home again on antibiotics.

Uncle Trevor, Grandpa, Mom and Chase all mask-up for a cap change because we're going home!
Uncle Trevor, Grandpa, Mom and Chase all mask-up for a cap change because we’re going home!

At this time, there is no clear reason for his multiple infections, but the constant use of his line (with his IV nutrition) and the exhaustion of his body after a year of chemo are considered to play a big part.  Whatever the cause, we were very blessed by a almost a week at home before going back – this time; a planned visit.

On Thursday, August 29, Chase went into the OR for his 8th central line.  Eight.  During the surgery, the doctors removed the PICC line in his arm and did a spinal tap to check his spinal fluid for cancer cells.  After 2+ hours in surgery, we learned that there had been some slight problems with the new port, and the attending surgeon later told us that she had instructed the team to stay in the room – that nobody left until the port was fixed because Chase really needed this line.  We were so thankful for her persistence and detail as a lack of resolution would have meant Chase going back into surgery the next morning to repair the damage.

August 28
Late Thursday night, Chase and Aunt Carrie celebrate the loss of the PICC and the successful port surgery.

After surgery, Chase was admitted to the hospital for chemo – his first dose since the end of July – the longest chemo break he’s had since radiation ended.  He successfully completed the round and as the last hours of August faded into September; began the fighting and healing from the poison with a five hour packed red blood cell transfusion.

And so ended August.

Moment by moment.

“But they who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and ot be weary; they shall walk and not faint.”  Isaiah 40:31