Monthly Archives: August 2015

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.]