The Good, The Bad, And The Same

Pre-procedure game of "Got Your Nose" was pretty epic...

Pre-procedure game of “Got Your Nose” was pretty epic…

Monday

He lay on the pre-op bed and absolutely knocked us over:

“I will do a good job and I will be fine because I’m a survivor, okay?”

The medicine kicked in and he asked me to text his home healthcare nurse and let her know he’d been brave for the needle in his arm.  And then, with a sigh, he passed into oblivion again for yet another MRI.  I wish I could tell you the number but I’ve lost track…his 30th? …40th?  Yeah, there have been a lot.

"Tell Miss Joanna I'm doing it, okay?  I give you permission to tell her." -Chase

“Tell Miss Joanna I’m doing it, okay? I give you permission to tell her.” -Chase

Tuesday

Despite a brief meeting with Chase’s neurosurgeon on Monday afternoon, the final word came, as it always does, from neuro-oncology regarding the MRI.  The cysts appear to have grown again, but Chase’s spine looks clear, his condition is beautifully stable, he isn’t having seizures, and so, we continue to wait.  If the cysts continue to grow, he may need a biopsy or some other surgical intervention, but it is not the right time for those things.  And so we wait some more…

Placing special markers on his spine

Placing special markers on his spine

This is bad because nothing should be growing.

This is good because nothing is growing fast or harmfully.

This is the same because everything is growing marginally as they has been all along and we’re pretty much exactly where we were three months ago: watching, waiting, and scheduling another MRI in a few more months.

Out of the tube and awake...barely.

Out of the tube and awake…barely.

And as I write these things and feel a little weary as we start the fourth year on this AT/RT road, I’m mentally checking myself for complaining about a living, breathing son who probably shouldn’t have survived more than six months, some three years ago.  The scan results comes down to what they always do: perspective.

Stuck in the wait a little while longer and choosing joy… moment by moment.

Hey, you've got to stay in shape if you're going to give out warm hugs all the time... ;)

Blood pressure cuff + stick arms … If anything can handle it, Dr. Ewoldt can ;)

Marking A Year Of Another Kind

Bob and Chase preparing for the MRI - Thursday, August 14, 2014

Bob and Chase preparing for the MRI – Thursday, August 14, 2014

We’re supposed to “throw back” on Thursdays and “flash back” on Fridays and today is yet another date to mark.  Recently, we’ve had an awful lot of “one year ago”, “two years ago”, and so on, but sometimes the days are really long, the years are short and stressful, and rehearsing our previous survivals and God’s goodness to us in them is the only way to keep breathing.  And so, we go back…again.

One year ago today, I stood in the barren kitchen of a newly bought house (a seeming symbol of a fresh start), staring out at the view that would be my new back yard, and listening to the voice on the other end of the phone as my stomach dropped: “His spine looks clear and overall, his brain looks amazing, but…”

Those words kicked off a season of deep shadow that has been some of the most difficult waiting since his initial diagnosis.  The every six week scans, the waiting for growth… 

But today, we are stopping to mark and remember that Chase has now lived for one year, one whole year with his tumor bed growths/radiation effects/whatever they are and he’s lived as fully and well as ever he can.  We’re so thankful.

It’s incredibly frightening to write these words -about how well Chase is doing and how long he’s gone without an issue- when he’s about 72 hours away from another MRI.  But no matter what happens in this next week, today is a good day and we’ll take it one breath at a time in the… moment by moment.  

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deut. 31:8

Ten Thousand Reasons For My Heart To Find…

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“Wait here”, the manager said, and we leaned against the wall, all six of us, like a giant line-up.  I turned to Chase and whispered: “Are you excited to meet Matt Redman?” and he nodded and grinned as  we leaned against the wall in the wait. 

I suppose we expected fanfare, or a crowd, or something to herald this amazing artist – but suddenly, humbly and quietly (I didn’t even from which direction he came), he was standing in front of us and there were no handshakes – only hugs.  He said he’d heard a lot about us and then he moved down the line of us and greeted each one, learning names and personal details.  He met Karsten’s stuffed dog, talked with Darcy about her loom bracelets and their colors, and got on his knees in front of Chase and Aidan and asked them if Spiderman and Batman were in a competition, who would win?

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And the craziest, most amazing part of it all?  We got to stand in front of Matt Redman, look him in the eye, and try and put into words what the song 10,000 Reasons means to us….  

How it underscores every car ride to the hospital…

How it’s floated out of most pre-procedure rooms…

How most of the hematology and oncology staff have been shown the music video at one time or other…

How it was the last thing Chase heard every day as he whispered “I’m so brave” and slipped into unconsciousness on the radiation days…

How every music therapist in the hospital downloaded the chords because they knew if they went to Chase’s room, it’d be the song he’d want to hear…

How it wrapped us up as we’d sit, high about the lake, day after day in the dark cancer days when the fevers wouldn’t break and the cancer cells wouldn’t leave…

Oh how we failed!  There are not having enough words, enough good words to put into a few sentences what three years of this song as a soundtrack to our lives has meant.  How precious it is to us, and how precious Matt Redman is to us because of it.  There have been times and seasons when our hearts were broken and we could not call out, and the only thing that came from us to God were Matt’s words, Matt’s voice in this song as we had none left ourselves.  This song has been one of the greatest gifts — until last night when we got the opportunity to try and find the words to tell him of it’s impact.

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And how I wish you all could have been with us and watched as Chase sang along to so many of the songs, raised his arms in worship, clapped and cheered, even danced a little.  And at the end of the night, before the closing song, the room got quiet as Matt spoke and he told them all about how he’d just met a family and the kids were all “firecrackers” (I mean, did he get us or what?) and that one of the sons had a brain tumor and then, Matt Redman told the room a minute of our story and Chase’s love of the song because – as he said – we were there to worship, but the church is always there to bear each other’s burdens, and we are the church, and as I sat in the hundreds of people, with Chase on my lap, Matt Redman invited the church to bear Chase’s journey with us, as a picture of Chase went up on all the screens, and Chase gasped and exclaimed “That’s me!”.  Matt dedicated the song to the Lord, but said they’d sing it with Chase that night, and so we all stood together in this great room with hundreds around us and cried as we sang every word by heart – the way God put things together blew me away yet again.

And on that day when my strength is failing,
The end draws near and my time has come,
Still my soul will sing Your praise unending…
Ten thousand years, and then forevermore.

And all the way home, late into the night, Chase chatted on about “my friend Mr. Matt” and how he loved him and missed him and wanted to give him another hug “…because he sang my song, Mom!  He sang my song!”

We are so thankful for this once-in-a-lifetime experience of worship and fellowship…

…moment by moment.

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*For more on the ministry and music of Matt Redman, please visit his website here.*

Of Wheelchairs And Joy

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Her life as she knew it changed forever when she was 17 and she has faithfully used the crazy hard changes for truth and beauty and just recently, the children and I had the great privilege of actually meeting Joni Eareckson Tada.  I watched their faces and they were afraid to get too close lest they hurt her – they have yet to fully understand her wheelchair and it’s reasons – but she smiled at them and encouraged them to come closer and they couldn’t resist her joy.

Do you know her story?   It’s real and it’s raw and she’s a hero of mine because she never stops seeking the goodness of God when all the life circumstances are anything but.  Knowing her story, listening to her speak, reading her writing – all of it – is such a wonderful reminder that the day for no pain and tears is coming.  It is not today, but it’s coming, and God remains faithful while we wait.

Moment by moment.

“There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose.” – Alan Redpath

[This quote is a favorite of mine and is listed among Mrs. Tada’s favorites as well.]

 

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

Of Birth Order, Stature, And What Really Counts…

“Are they twins?”  The lady smiled as she gestured to Chase and Karsten – brothers born 22 months apart. 

The man bent forward to talk to Chase, who will be six in December: “I have a granddaughter who is three like you, too!”

As we sat at the lunch table one day last week, we talked about who had been born first in our family and Chase kept insisting he was the baby.  We tried to point out several times, in several ways, that he is older than Karsten, yet he refused to accept it and finally, the source of his reasoning became clear: “But I’m the baby of the family because I’m the smallest!”  And just like that, it was spoken.  He sees and understands – on some level – the radiation damage in it’s unfolding.  

I’ve considered this moment for some time and it’s here.  Karsten is as tall as Chase.  It’s neck-and-neck, but it’s happened.  Karsten, at nearly four, stands as tall and far more broad than his older brother.  And Aidan, though a scant 12-months older, stands nearly a head taller than both of them.  

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It’s heartbreaking to see this and it’s precious because Chase is alive, and it never stops being amazing to hear his wise, old voice come out of such a tiny body.

So, I’ll keep the smaller size of clothing in the drawer knowing Chase will probably use them a little longer.  And if stature were measured in experience, he’d already be ten feet tall.  

Moment by moment.

“The Lord doesn’t see things the way you see them. People judge by outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7b

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Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t.  The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary.  He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me.  “Mom, stop talking.  Please don’t say anything else.  I need to breathe.  No more talking… I need to breathe in and breathe out right now.”  And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.  

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle

The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart.  One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis.  I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.  

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Being perfectly still

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends.  By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there.  Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. IMG_1250  And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

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Sleep finally wins

 

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack.  They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.”  And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.”  He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls.  And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug.  Those are the good moments to breathe in.

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Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.  

For now we await results.  No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

Someone To Know Me

He’s afraid of almost nothing outside the hospital, but he hates change like the plague.  I mean, knock-down, drag-out, hates it straight up.  One time I changed his bed without telling him and he lay on the floor and screamed until I could persuade him that new sheets weren’t the end of the world.  And I tell you truth when I say that I’ve just gotten him to wear shorts in the warm weather and not steal his winter hat onto the school bus in the June 80 degree days because he doesn’t remember wearing shorts last summer and all he has in his memory are long pants and winter coats.

Everything I’ve ever read about a brain hurt by surgery and tumor says this is not uncommon.  It takes longer to adjust and more to cope and the little things are always very, very big.  If there’s no mental paradigm for something, it’s usually treated with anything from caution to outright hostility.

Three weeks ago now, Chase was to start summer school, but we sent him to vacation bible school at the church for the first week instead.  He wanted to be with his siblings and, his life being so different as it is, I couldn’t refuse him this opportunity.  

The Monday morning of “VBS” rolled around and suddenly, he didn’t want to go.  When I asked why not, he would evade by screaming about something or simply leaving the room.  Finally, he calmed down, crept back into the kitchen sheepishly, and sighed.  “Are you ready to talk now, Chase?”  He nodded and then whimpered quietly.  That sound meant only one thing: Chase was afraid of something. 

We sat cross-legged on the floor of the kitchen and talked until I realized that all the screaming had been a sabotage of sorts because while he knew the church and the people, he didn’t remember “VBS”…something he preferred to refer to as “PBS” or “PBS.org” (for real), and because he didn’t know it and couldn’t account for it in his brain, it terrified him.  

As we talked, I asked if he wanted to pray and he nodded silently and so we prayed that God would give Chase peace.  I said “Amen” and his head shot up with a quick question.  “Mom?  Will you pray that my teacher would be somebody who knows me? Please? I need somebody who knows me.”  Not just someone that he knew…no, someone who knew him.

An hour passed and as we walked into the brightly lit auditorium, I watched Chase lose his fear to intrigue as he took in the jungle set and the replica of Mount Kilimanjaro (a part of the week’s theme).  We walked forward to find his seat and at the end of his row, checking the children in, was his 2-year-old Sunday school teacher, a beloved woman who taught him that God is good and glorious and always with us and she said it so often to him from the day he turned 2 that when he lay on pre-op beds and in hospital rooms, when all else pushed aside in his fear, it was those words from the Sunday school room – “God is near me” – that would come to him and he’d sing them softly as he’d wait for the doctors.  This was the woman who’d walk him through the week.  

I’m putting this story down for you to read because I often fall into thought that finds the hard things unjust and the good things deserved and the small things somehow just getting ignored.  So, I’m writing this here and now because life comes with crazy ups and downs and sometimes, I forget to hand the small things over to the One who knows and when I do remember, I’m often too busy to record exactly how He surrounds and blesses.  Chase prayed for someone to know him.  

Stopping to be thankfulmoment by moment.

Chase and Mrs. Worley

Chase and Mrs. Worley

Still Being “Me-Me”…

Some time ago, I wrote that we were given reason to believe Chase might have cataracts.  As only Chase can, he went about the final diagnosis in the most interesting way possible, going “for broke” in the eye department last Monday – having contracted pink eye over the weekend before his meeting with the specialists.

The morning turned into a typical Chase-at-the-doctor type morning, logging in several hours start to finish, one bargaining session [“Come out from under that chair, Chase…I mean it, Chase…], and at least one good, old-fashioned three-people-to-hold-him-down moment.  Can you imagine having your eyes dilated in the middle of rampant conjunctivitis?  Chase could not.  [And to be fair, I wouldn’t put it on my wish list either…]  Whether it was the feeling of light sensitivity, not being able to see, or actual discomfort, I’ll never know, but he didn’t stop screaming for nearly two hours after the appointment and only stopped when he fell into an exhausted sleep leaning on my shoulder.  It was a Monday for the ages…

Waiting to see the doctor

Waiting to see the doctor

The less than great news is that Chase does indeed have cataracts and his vision is quite poor.  The cataracts are being attributed to his radiation treatment.

Radiation – the very thing we elected to do when chemotherapy alone wasn’t working to take the cancer from his body.  

Radiation – the component that very likely saved his life.  

We knew these things might come.  We’ve known them from almost the same day of his diagnosis, but that doesn’t mean it doesn’t hurt like a punch to the gut when you see him sitting in the chair, or hear the outcome and know it’s because of decisions you made.  

This is the hard part of Chase’s life and treatment – the offered doors are two: death, or damage.  To date, there is no third door for AT/RT.  

However, even with all the difficult, there is really good news, too.  Though Chase needs glasses and will need to be monitored every few months for the foreseeable future, the doctor on his case indicated that Chase is still able to see around the cataracts and that surgery is not a necessity at this time.  We realize that cataract surgery is not a big deal as far as surgical procedures go, but when your anesthesia stats are in double digits already, it’s nice to be able to prolong yet another time going under and more work being done.

Chase is very concerned about his need to wear glasses.  He keeps asking me if he’ll be able to take them off at the end of the day and go back to being “me-me” – the phrase he’s using to define the real him – as if the wearing of them will turn him into somebody else.  We keep assuring him that he’ll still be Chase even with the glasses on his face and that many people around him – many that he knows and loves – all wear glasses.  The glasses won’t change his person, just his sight.  And given how poor the number on his current vision is, we look forward to opening up life for him and allowing him to see more.  As always, we’ll take it…

…moment by moment.

Even superheroes get pink eye...

Even superheroes get pink eye…

The End Of A Moment: Intersecting Lines

You guys, for real… On Friday, Chase finished preschool.

I know people are always wishing that their babies would stop growing up and moving further on and away with their lives and I get that, I really do, but in Chase’s case, I love the growing up because it’s what life is about and there have been days and seasons when I didn’t know if we would have those life chances with him.

And for real… this is the kid that I held when he was too weak to walk, and I balanced him when, at age four, he learned to jump on two feet, and I sat with him as he diligently traced “exes” and “crosses” on paper – because intersecting lines were something his brain needed to work hard to figure out. Chase has gone from all these challenging places to taking the intersecting lines and spaces and forming the letters of his own first name.

He holds it in his hands here – not “Last Day of School” or anything else, but this, his name – a part of who he is.

For weeks now, he’s practiced and traced and when I asked him if he’d put it on the sign, he asked me if it had to be perfect, because Miss Marlene, his teacher, said it didn’t have to be perfect.

But, see…? It is perfect, the whole moment is perfect because it’s Chase and he’s gone further than anyone dared hope.

We are so blessed.  Moment by moment.

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