Monthly Archives: May 2013

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.

20130515-102749.jpg

UPDATE: Facing A Fear

We are sitting in the surgery waiting room and I wanted to give a quick update on Chase’s procedure…
We got to clinic early this morning (where we meet with his neuro-oncology team) and were told that in discussing the anesthesia issue further, it would be best to put a new needle in the port before Chase went downstairs for his procedure. They know Chase and knew that his fear of a dressing change/new needle is nothing compared to an anesthesia mask.
I should note that he was able to be without a needle in his chest for close to an hour and he spent that time dominating the clinic floor, running back and forth in his gray camo pants and no shirt, proudly displaying his “no tubie” chest to any and all who would look at it.
In this moment, we are so thankful for a team who sincerely considers Chase’s best interests.
Because he had the needle placed, he was able to have the IV Versed (forgetting medicine) and as I walked alongside his bed to the OR doors, he said “It’s okay, Mom. You can go now. I’m going to take my nap.”

Moment by moment.

[picture: that first moment when the needle came out]

20130513-115804.jpg

Facing A Fear

Chase’s doctor once told us that most parents know it’s time for more chemo when they see their child looking better, eating more, and having more energy.  Proving this theory, Chase’s Thursday lab results were really encouraging which means we are scheduled to go back to the hospital on Monday.  It’s time.  This particular round of chemo includes several days of being admitted to the hospital as well as a spinal tap under anesthesia.

You may remember that I wrote at one time about Chase’s vivid anesthesia memories.  Since that time, we have had really good experiences because he has been given a “forgetting” medicine in pre=op -while still with us- that relaxes him and saves him the memory of a sterile operating room and a mask over his face all without the comfort of mom or dad.

Because of some aspects of his new central line, Chase’s nurse will be removing the needle from his chest a couple of hours before he is scheduled for the spinal tap.  It’s a little tragic as there will be no shower or swimming pool to jump in and celebrate [children with the type of central lines he’s had until now can’t really bathe or swim], but mostly awesome as he has never officially been without his “tubie”.  However, there is a direct impact on the procedure.  The lack of needle in his chest means that there is no good way to administer medicine in pre-op, which means that Chase will go into the operating room by himself and be put under anesthesia while fully concious.

We have been talking about it every day.  How he will be a brave boy, and how he will take a deep breath and fall asleep, and even how -if he can be still- the doctors won’t have to hold him while they put the mask on his face.  He dialogues with us, and understands what he needs to do, but he is still very frightened.

Please pray for Chase on Monday, that he would be anxious for nothing and that God’s perfect peace would surpass and even confound all of our understanding about how Chase would most likely respond in that operating room. (Philippians 4:6-7)

This will be a big step for him and for all of us…but our God is much bigger.

Learning to let go… Moment by moment.

Of Neuro-Oncology and Compassion…

This video is a small introduction to Chase’s attending neuro-oncologist, Dr. Rishi Lulla.  We have been and are being so blessed by this amazing, compassionate, and dedicated doctor who exemplifies the phrase “above and beyond”.

Make sure to watch this…you might even recognize some people!  :)

Moment by moment.

That Time We Went To The Hospital…

These last two weeks have seemed a little like a single long day that wouldn’t quit!  As parents of a child with cancer, we have been carefully prepared to be ready at a moments’ notice to pack and run…and pack and run again, but this has been extraordinary even for us.  When I think through “moment by moment“, I never expect each new moment to be totally different from the last, but that’s exactly what this two-week day seemed to hold.

It all started as we commuted to the hospital for five straight days of all-day chemo infusions [insert comments and mutterings about traffic here] .  We were mercifully able to be home on Saturday, but on Sunday, our best layed plans for “normal” and “rest” were blown to smithereens as soon as I heard the words “Come quick! Chase is bleeding!” and realized that one lumen on his central line had torn.  …so, back to the hospital we went.

A lumen repair kit...aka: needle salvation

A lumen repair kit…aka: needle salvation

Sidenote: we often tell hospital staff “It’s Chase.”…as in “Yes, we know this rarely ever happens, but….it’s Chase.”

Back to the story… in true “It’s Chase” form, Chase’s line tear was in an area for which they had no repair parts, so after hours in the ER and the vascular access team weaving what can only be described as a sterile burrito (comprised of alcohol wipes, gauze and tegaderms) around the line -to protect from the errant bacteria-, we were discharged.  Until Tuesday.  When we went back in for blood and platelet transfusions and the line repair.  We left that same night and managed to stay out until…Wednesday night.  A whole 24 hours.  At which point, Chase hit his chemo nadir (when the chemo is at it’s strongest point), spiked a fever, and after sitting in the ER until 2:30AM, were re-admitted to the hospital.

We were hoping to go home fever-free sometime on Thursday when the newly repaired central line malfunctioned (see: more blood everywhere) and so we didn’t leave until Friday night.  I should also note that we’ve become very close with the vascular access team.  On Friday night, the stability of the line was still somewhat in question, but with nobody finding anything decisively wrong, Thursday’s blood experience was chalked up to a freakish incident of nature and we were discharged with the niggling thought that the line would only ever show it’s cards once we left the hospital…and got home…and tried to rest.  …which did indeed turn out to be the case.

The malfunctioning repair

The malfunctioning repair

On Saturday night, about an hour into Chase’s infusion, I realized his IV fluids were running down the front of his shirt, so after a brief moment of parental freak-out, I calmly put my eyeballs back into their sockets and we went back to the hospital.  Triage in the emergency room lasted so long that by the time the doctors came to look at the line, they declared everything dry and in need of testing.  After an hour or more of testing, it turned out that the line was leaking, so around our favorite admitting hour (2:30am, for those of you just joining us), we were again given a room with the promise of surgery consults in the morning.

Without a doubt, the worst part of the loss of a central line is the need for peripheral IVs (the kind they stick in your hand or arm).  For Chase, that usually means three to five people holding him down and the collapse of at least one vein from his terrifying struggle to escape the needle.  If you were questioning why we’d put up with a central line and all it’s drama in the first place, don’t miss this… The reason we put up with and even love the central line is because it saves Chase from needles.  Medical staff can draw blood and administer any medication or chemo through this line – without ever touching his body.

Proudly displaying his IV - "You should see the other guy!"

Proudly displaying his IV – “You should see the other guys!”

It took four people and two tries, but they finally got an IV in Chase’s hand.  And that concludes the events that led to Chase going into surgery on Sunday afternoon and getting a new central line.

Which summarily ended our two-week long day.

You can’t make this stuff up.

Moment by ever-changing moment.

The heart of man plans his ways, but the Lord establishes his steps. Proverbs 16:9

Sleeping peacefully in pre-op moments before he was taken back to the OR

Sleeping peacefully in pre-op moments before he was taken back to the OR