Tag: moment by moment

Three Years And A Letter

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This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come!  When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

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I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different.  This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.  

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat.  Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that.  Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

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None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull.  And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine.  ~Oceans, Hillsong United

The Second Year

Tuesday, July 31, 2012…

Two Years… Two whole years since the early morning panic gave way to a living nightmare on the day Chase was diagnosed.

What struck me most as I looked through the pictures and memories is that life can feel complicated now, and yet, as I look back over the last year and see such crazy hard times, I realize that I’m apt to forget what it looked like in the shadow of whatever the here and now happens to hold.  I can tend to see Chase’s deficits and struggles and not realize how healthy and robust he is now compared to the emaciated waif that was.   The truth is that much has changed.  The truth is also that there are many uncertainties ahead.  The truth is that God’s goodness and faithfulness to us have never and will never change.  And Chase is still living and breathing with us two whole years later.

We’ve spent many days listening to Rend Collective’s newest album.  Our family’s favorite song is “My Lighthouse” and I truly can’t think of better words to sum the year…the two years…or, the lifetime:

In my wrestling and in my doubts
In my failures You won’t walk out
Your great love will lead me through
You are the peace in my troubled sea

In the silence, You won’t let go
In my questions, Your truth will hold
Your great love will lead me through
You are the peace in my troubled sea

My Lighthouse, my lighthouse
Shining in the darkness, I will follow You
My Lighthouse, my Lighthouse
I will trust the promise, 
You will carry me safe to shore 
Safe to shore

I won’t fear what tomorrow brings
With each morning I’ll rise and sing
My God’s love will lead me through
You are the peace in my troubled sea

Fire before us, You’re the brightest
You will lead us through the storm

Even if we know nothing of what lies before us (and we don’t), we can look back and see the joy in so many ways.

Trusting He will lead us through the storm… moment by moment.

**Look back with us and find joy…**

Stable

In pre op waiting for the MRI to be available so Chase could proceed with anesthesia
In pre op waiting for the MRI to be available so Chase could proceed with anesthesia

After a very long day that included an inner ear procedure, waiting over an hour for the MRI, almost three hours under anesthesia, and a painful peripheral IV in the arm (instead of accessing Chase’s port), we received an early, unofficial word from the hospital last night: Chase’s MRI results were still being read, but there was no evidence of new tumor growth.  However, there was still a question about the areas of fluid retention and cavernomas (effects of surgery and radiation)…

Removing the painful IV
Removing the painful IV

This morning, we received the second and final call.  The official word is “stable” on all fronts!

There may have been some very minor changes to the cavernomas, but nothing of concern at this point and the areas of fluid are virtually unchanged.  We will have the chance to view the MRI and discuss all of this more in depth next week with Chase’s neuro-oncologist and his neurosurgeon in his routine follow ups.

Taking vitals in post op recovery - and getting to eat for the first time in 9 hours!
Taking vitals in post op recovery – and getting to eat for the first time in 9 hours!

Praising God in awe.   Some days, I still can’t believe Chase has survived 21 months after an advanced AT/RT diagnosis.

Thank you again for your prayer and encouragement as we take this…

Moment by moment.

In the car, on the way home. A long day for a very brave boy.
In the car, on the way home. A long day for a very brave boy.

Being Ready To Go

Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.

Chase in the midst of his first admission for a fever, with his NG tube in his nose.

 The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.” Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.

Chase swinging on the swing with Daddy during one of the few days at home from “his hospital.”

It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)

At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.

Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.

Chase during his inpatient chemo this last week.

Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.

And so we continue on … Making memories, finding joy, and being ever ready to go.

An Unusual Complication

Tuesday, 3:30am…

The first round of chemo is done!

Chase was supposed to have been released from the hospital this morning… But it looks like his brand new central line (placed on Thursday) is infected. So, unless there is a miracle in the next few hours, Chase will go back into the OR to have the line removed.

What exactly this means for his next chemo or his ability to fight infection (as his white count is already rapidly dropping), the medical team doesn’t know. We have been told that this is the surgeon’s “call” in the next few hours.

In this moment, I have many unanswered questions about what the next few days will hold. I also miss my family and am frustrated to miss that small window to be together again. Along with this feeling there is a thankfulness and relief that they caught the issue while we were still here and that they’re carefully monitoring him.

I’ve been told that I have “every right” to be upset by this unusual “complication.” Really? Just this one? I don’t mean to be facetious, but in my mind, on some level, it’s all been a giant, graphic complication from the moment the local ER doctor walked into the room and said, “It doesn’t look good. The CT shows a large mass in his head.”

Where do we go from here?

Stay tuned …

How will we handle it?
Moment by moment

“Whatever may pass, and whatever lies before me, let me be singing when the evening comes … You’re rich in love, and You’re slow to anger, Your name is great, and Your heart is kind. For all Your goodness I will keep on singing… Ten thousand reasons for my heart to find…”10,000 Reasons (Bless the Lord), Matt Redman

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