Category: Cancer

Passing Through

One of Chase’s favorite things to do is to dance around the hospital room while listening to music.  Even with his IV pole, chords, and tubes following him, it doesn’t matter, he loves music.

Yesterday, he had to take an antibiotic that gives him something called “red man’s syndrome” (he turns red and itchy) and Benadryl makes him better…and sleepy.  So, after having Benadryl every 6 hours all day, it was 9:00pm and we were having a “dance party” in the middle of the Hematology/Oncology floor.

Sometimes, in moments like that, the cancer-ness of it all strikes me fresh.  …I’m dancing…in a hospital room…with a radius of 2 feet because any further and a child’s arterial line is pulled…and he has the line because he has cancer…deadly, deadly cancer.

Then the words of the song we were listening to crept through my thoughts… (Chase was listening to “O Holy Night“)

And in His name all oppression shall cease…

As silly as it sounds, it brought tears to my eyes.  Even though the verse refers to human oppression; as I held Chase is one hand and his IV tubes in the other, I thought of the oppressive nature of Chase’s cancer.  More than just Chase’s cancer…of all cancer and all sickness and pain and all that is wrong and oppressive in this world.

As of this moment, the cancer has not stopped.  For us, it has not ceased.  In fact, quite the opposite… It is an intense, all-consuming thing with what seems like endless complications.

So what then?  If, in this painful, broken life, the oppression never seems to end, there must be something other than the removal of the circumstance that brings peace!

There is.  Of this, I am sure.  We are not alone in our pain.

When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.  For I am the Lord your God, the Holy One of Israel, your Savior…

In this moment, we await a single lab…one single test tomorrow morning which will inform the decision to send us home or keep us here for what will most likely be another central line surgery.  When I dwell on the implication, after months of treatment and too many surgeries, it feels like the water, river, fire and flame rolled into one.

But…

We will pass through because an all-knowing, loving God has promised to be with us.

Moment by moment.

 

Of Lines, Fevers, and Gut Instinct

As a parent, you know when something is wrong with your child.   It’s a gut instinct. It’s often inexplicable. You just know.  Which is precisely why the ER doctor’s words brought little peace: “Chase’s counts are really good, so we will be able to give him a broad spectrum antibiotic and then you should be on your way.”
Within an hour of that conversation, the prescribed antibiotic touched off the real reason for the fevers and Chase’s temperature rose alarmingly (105.8) while his blood pressure dropped. In this moment, the parental gut had been correct and we went from preparing for discharge to preparing for many more hours in the ER and even the possibility of needing to move him to the ICU.
After almost eight hours on the emergency floor, Chase stabilized in such a way that everyone involved felt comfortable sending him to the Hem/Onc floor (his second home) and bypassing the ICU.  Thankful.

Nine Hours Later…
This morning, the doctor came in to inform us that the blood taken in the ER shows early signs of an infection. At this moment, they are still in the process of testing the bacteria and gathering information, but if this is the case; it will be Chase’s second line infection in as many months. There will be a best case scenario of a couple weeks of antibiotics and a worse case scenario in which the line itself is the issue and may need to be pulled (read: more surgeries and peripheral IVs).  And with all of this comes a certain amount of parental self-doubt… What are we doing wrong? How are we mis-caring for the line in such a way that he lays in a bed, shivering and whimpering while his body fights itself?
Ultimately, in this moment, there are no answers as to what the next day or week holds. We will continue as we started…
With grace upon grace… Moment by moment.

(picture: finally leaving the ER; moving from the transport into his room…all the cords)

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31 Days: Cancer By Numbers

My darling mother, who often serves as my “right hand man“, was gone for a whole month recently.  By the way, when I say “who often“, I mean “who constantly“.  It took many, many people to stand in the gap as she was gone and as I was trying (very inadequately) to thank all the gap-standers and stretcher-bearers I found myself flipping back through my calendar and the mountain of discharge papers to put together a list of the 31 days.  A thumbnail sketch of our bigger picture.  I’m posting it because the numbers are real and yet another glimpse of our cancer life.

In the last 31 days…

18 days were spent in the hospital.

There were 2 surgeries/surgical procedures.

There were 4 IVs placed and lost.

There were 10 days of chemo infusions.

There were 3 separate trips to the ER.

There were 7 blood and platelet transfusions.

There were 14 lab appointments, dressing changes, or other doctors’ appointments.

…in addition to multiple oral and IV medication given round the clock, the necessary medical care for a child with a central line/IV nutrition, finishing the year of home schooling, taking care of the house, and daily life with four little kids.

The crazy part of this is that I started counting on May 13th, so this list doesn’t even reflect all of Chase’s central line issues before that date or the multiple transfusions/days in the hospital/labs, etc that have happened since.

This isn’t meant to draw attention to our busy schedule, or indicate that we’re above average in any way – as I mentioned at the beginning: I had amazing amounts of help and cancer or not, everybody’s busy.  I just wanted to share these numbers because they’re real and they’re intense…and in a very small way, they explain why I haven’t blogged as much recently, why we have dark circles under our eyes, and why Chase cries more now when we’re at the hospital.

Throughout the 31 days, I have continued to be greatly comforted by Deuteronomy 33:27:

The eternal God is your dwelling place, and underneath are the everlasting arms.

Those arms are strong enough to carry the cancer numbers when we can’t.

Moment by moment.

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The Everlasting Arms

This is a guest post I originally wrote for another blog a little over a week ago.  I am reposting it here because it is near and dear to my heart.  A special thanks to the dear friend who texted me the verse that I have been clinging to ever since.

The sun was going down outside the picture window as the staff laid the facts before me. Like a snowball, they gathered and accumulated . . . access to his body had been compromised, the chemo—the chemo known for destroying muscle and tissue—most likely went where it shouldn’t, painful IVs must be placed, he would most likely need surgery in the morning to replace the lost access. . . . And all the while, my baby, mere hours out of a different surgery room, weeps in frustration and pain on the hospital bed.

My mind screams . . . no, not even a scream . . . a frustrated whisper that causes my heart to race and my eyes to well up as I think it over and over again . . . “Please God, no more . . . no more.”

I send a quick message to some friends asking for prayer and sit down to think. I know God is good. I know His plans are for His glory and my good. I know He will be faithful to Himself through me, but in this moment, my circumstances have a terrible, choking hold on what I know to be true. What do I do? I feel too weary to pray more than a simple, selfish plea to make it stop. “No more . . .”

My phone sounded and I look at the simple message . . .

Deuteronomy 33:27

The eternal God is your dwelling place, and underneath are the everlasting arms . . .

Arms that last forever? That bear every burden? That don’t stop?

How low soever the people of God are at any time brought, everlasting arms are underneath them to keep the spirit from sinking, from fainting, and the faith from failing, even when they are pressed above measure. The everlasting covenant, and the everlasting consolations that flow from it, are indeed everlasting arms, with which believers have been wonderfully sustained, and kept cheerful in the worst of times; divine grace is sufficient for them. (Matthew Henry)

Some months ago, I heard a prayer that I echo often and that catches the essence of my need in this moment: “Don’t give me a better circumstance, but rather, give me a more clear view of you in my circumstance.”

In truth, my circumstances have changed very little since that last sunset when I first read the verse. As I write this, I’m still by a hospital bed, the newest complications of a wretched disease in a broken body still exist, and there was even another surgery this afternoon. But His sufficient grace is here too and the choke-hold relaxes. Sufficient: enough, adequate. The need is met in His moment—not mine—in His perfect way. Whatever “more” I’m begging to be saved from; I need not. I can even be cheerful! Though physically in a hospital room, I live with the eternal God, the everlasting arms are under me and they will not fail.

Moment by moment.

Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more…
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

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