Monthly Archives: June 2014

It’s The Little BIG Things…

He climbed onto his brother’s bike, said he could do it without help, and rode away down the sidewalk.  Chase –once watched anxiously to see if he’d ever walk and talk after major brain surgery– rode a big kid bike today!

The determination of this child never ceases to amaze me.

Moment by moment.

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Tall As The Trees

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Monday morning~

On our way to Chase’s 18-month post-radiation appointment.  18 whole months since he last whispered “I’m so brave…” and we wondered if this treatment would work and if the cancer would ever clear from his spine. 

As we drove, he stared out the car window into the cloudy morning and said: “Mom, one day, I’ll be as tall and strong as the trees.

We had a precious morning with these people who were only meant to oversee his care, but became dear friends instead.  Rejoicing in the life given…

…moment by moment.

Small Mercies

It’s so beautiful how the small mercies are everywhere.

Chase had an incredibly early surgery time which allowed us to avoid traffic (as much as you ever can avoid traffic in Chicago…on a Friday…during construction season…)

Only the most important part of the day: picking the pre-op movie

Only the most important part of the day: picking the pre-op movie

The anesthesiologist on duty today has worked with Chase multiple times and knows his preferences well.  In fact, this doctor was the same doctor who administered anesthesia on Chase’s final day of radiation (December 12, 2012) and he still remembered Chase and the party at the radiation center.  This doctor always carries a mini iPad with him to distract children going into the OR which meant Chase was so busy playing “Fruit Niinja” that he barely noticed us as we parted.  (This is what we want, right?)

In pre-op with our anesthesiologist and the mini iPad

In pre-op with our anesthesiologist and the mini iPad

The surgeon assigned to Chase was actually one of the few at Lurie who hasn’t placed a central line for Chase.  Okay, maybe that’s a slight exaggeration, but when the doctor walked into the room and said “I see that several of my colleagues have worked with Chase…”, suffice to say Chase’s central line history preceded him.  He told us that there can be complications to removing a port – like the tube being stuck in the muscle – but today, there were none.

Heading into surgery with the doctors

Heading into surgery with the doctors

Chase’s oxygen saturation levels dropped slightly after surgery, but he remained stable (with a little help from the oxygen mask) and awoke well.

Getting a little fresh air in post-op

Getting a little fresh air in post-op

The peripheral IV (which has always been placed in his thin-skinned, often bruised arms) was placed in his foot – making it that much easier to remove and giving his arms a break.

Clean it and stitch it and mark it with...steri strips?

Clean it and stitch it and mark it with…steri strips?

And when he sat up to leave in recovery, he placed a hand across his chest -as if to both protect and feel the change-, looked at Bob and me, and said: “I’m free!”

At last.

Goodbye, dear port.  We’ll miss you, but not really…

The port itself [photo credit: Dr. Anthony Chin]

The port itself [photo credit: Dr. Anthony Chin]

Moment by moment.

Leaving the hospital

Leaving the hospital

Of Hickmans, PICCs, and Ports…A Farewell

Chase's second Hickman - Fall 2012

Chase’s second Hickman – Fall 2012

“The general protocol is that after six months of clear scans, we remove the port.  …even for the ATRT kids.  And as I look at Chase, I don’t see any reason to make an exception.”

We took a moment to absorb the words our attending doctor was speaking.  Even with the concern of relapse and all that comes with an ATRT diagnosis, the port could and should be removed.

Changing the dressing on a Hickman - Winter 2013

Changing the dressing on a Hickman – Winter 2013

This small piece of foreign material currently embedded in Chase’s chest has somehow come to both symbolize and encapsulate the last two years.  It was the first thing in and will be the last thing out.  We’ve had it placed, and replaced…and re-replaced again…and again.  We’ve fought to keep it, repair it, and protect it.  We became trained and comfortable in the procedures to sterilize it and triage when there was a problem.  It was a picture of the need for chemo, yes, but it also provided life-lines of blood, platelets, fluids, medicines, and even nourishment when he could not eat.

What happens when the pressure cap falls off a central line...

What happens when the pressure cap falls off a central line…

His access has at times been on both sides of his chest and in both arms as well.  It’s been a double lumen Broviac Hickman, a PICC, and a port.   It has inexplicably infected multiple times, been infiltrated by a deadly chemo, cracked and broken and once, even slipped out as he turned in his sleep.

A cracked line...

A cracked line…

Chase’s first and shortest Broviac was placed on August 16, 2012 when he was only 2 years old.  He doesn’t remember a time in his life when he didn’t have either tubes coming out of his body or an access point for the tubes embedded under his skin.  In it’s own way, it’s become part of his body and his identity, so when he was told that it was to be removed, he became very angry and questioned whether the doctors were going to remove his skin and bones as well – so much is this small device a part of him.

In pre-op for another port surgery with Nurse Jen

In pre-op for another port surgery with Nurse Jen

This constant access to his body was in some ways the craziest complication of his treatment months, yet a complete blessing too.  But now it’s time for the last remnant of the chemo chapter that can be removed to be separated from his body.  No more flushing it and locking it to keep it clean.  No more crash kit with clamps, swabs, and gloves in a bag that goes everywhere Chase does.  No more ER fever guidelines.  When he goes in for MRIs or labs, he’ll require a peripheral IV…just like a “normal” child.  A scary and wonderful thought.

What it looks like when the port needle slips and the fluid infuses into the skin around the chest...

What it looks like when the port needle slips and the fluid infuses into the skin around the chest…

He has equally fought it and protected it, and tomorrow, Friday, June 13, he’ll go into an operating one more time and they’ll open his chest and cut it out of the muscles into which it has been so carefully sewn.

We so appreciate your prayer as Chase undergoes this surgery and as we close this chapter.  An oddly bittersweet… moment by moment.

“Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9  [Chase’s favorite verse to say -often again and again- before he goes into surgery]

A moment of rest after a port removal and a PICC placement - lines all over his body

A moment of rest after a port removal and a PICC placement – lines all over his body

To Channel The Fight…Again

Spring EEG prep

Spring EEG prep

April 11, 2014

We sat in the room for almost two hours and dialogued on how the brain works.  Chase fell asleep in my arms as Bob and I sat with the epilepsy specialist, discussing the EEG results and asking our questions.  The human brain is an amazing place; full of energy and a fragile balance that the slightest thing can disrupt at any time.  Marvelous and scary.

Despite Chase’s anti-seizure medication having some issues, after two hours of discourse and answered questions, we were counseled to stay the course.  We were told that Chase’s brain was still too close to it’s trauma and needed to be protected from itself.  Because Chase’s behavior was stable, we were to stay the course, increase his vitamins and call in three weeks to follow up.

[We were also re-briefed and updated on monitoring for any sort of seizure and the actions we should take if we ever observe anything.  This included a seizure crash kit of sorts that travels with Chase at all times…just in case.]


May 2, 2014

Three weeks came and went and even with the extra vitamins, the aggression issue didn’t seem to improve at all, so, despite the continued need for neuro protection, the specialists conferred and decided to try reducing the anti-seizure medication.  It’s only the tiniest bit (literally only a half of a milligram on one of the two daily doses), but over the last four weeks, we’ve seen a little improvement!

We’ve had some really encouraging, productive conversations with his teams of doctors and are feeling heard on this issue, however, there’s still much left to understand.  Nobody knows for certain if what we’re seeing are the effects of medication, or radiation, or tumor, or being forced into an adult life at age two.  The one thing we know is that whether we’re in a hospital room with specialists or in our home, with our family, working through a difficult moment; pursuing answers will be a marathon; not a sprint, and only time will prove…

We would so appreciate your continued prayer for wisdom and discernment as we continue to approach who Chase is and how to best care for him in all his facets of this special life.

Moment by moment.

Hear me, O God, when I cry; listen to my prayer. You are the One I will call when pushed to the edge, when my heart is faint. Shoulder me to the rock above me. For You are my protection, an impenetrable fortress from my enemies. Let me live in Your sanctuary forever; let me find safety in the shadow of Your wings.  Psalm 61:1-4 (The Voice)

Taking a moment...

Taking a moment…

On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road.  Chase’s first day of therapies.  A new building, new people, new things to be learned…the start of a new chapter.  And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead?  Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel.  photo 2 (1)“Mommy? Where are we?  This is not the road to my hospital.”  For this is how Chase tells direction.  There is the road that leads to his hospital and then there is every other road ever made.  I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard.  Then; “But Mom, are we late?”

“No, Chase.  We aren’t late.  We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.”  I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?  

Finally, this; “Chase, do you trust me?  I know this road and I can see the clock. I know where we’re going and I know that we’re not late.  You don’t know this road, but I do.  I’ve driven on it before and I know where it goes.  Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock.  You can; but I cannot.”  

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn.  He tells me that even though I don’t know the road, He does.  He knows where it goes and what’s along the way.  He knows the timing of it and how it will take me to places that will be hard but will make me stronger.  And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

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