Alice: Post-Radiation MRI

You formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
– from Ps. 139

So today we went to see the monster… and there was no monster to see. 

We went down with some measure of fear and trepidation; the unknown always seems to be a heavier burden than the known. We knew good things have been happening as far as Alice’s return to her old form, but we haven’t forgotten that just a couple weeks ago it seemed her eyes were crossing again, so honestly how good could it be?

Plus, we’ve been told that if the tumor is gone, it can mean a quicker comeback. So what do you want to see? Conflicted. I’d love to see it gone. But if that means bad news in the long run, does that mean I’d love to see it there?

Michele and I prayed together several times in the hours leading up to this, not knowing exactly what we should pray for. It always seems more fulfilling to pray for something that you feel deep down like there’s some chance you might get it – and that’s little things, more often than not: a restful night, a peaceful heart, a bit of good news. We still pray, “Please, let us keep her. Please!” But we pray other things too. “Thy will be done” seems to be more and more frequent. Sometimes it feels like a defeatist way to pray, sometimes pious, and sometimes, thankfully, we really feel like we mean it.

Alice had said the night before, “I’m gonna go to the doctor’s house and see my friends!” And she did. She arrived at the Sedation unit a returning hero. The nurses all came to see her and love on her, to marvel at how big Violet has gotten, and wish us all a Merry Christmas. It was like “old times.” A ride in the bed, Alice on my lap, SpongeBob on the laptop, a blast of the white stuff, and off to sleep.

Forty minutes later they wheeled her bed back in, and this time it took her about a half hour to wake up, which she did, a bit cranky to boot. Ah well, no matter.

Dr. Chris, the brain tumor specialist extraordinaire who we only see on really important, usually bad-news kind of days (not his fault!) came in with a light step and a happy heart. “I’m impressed! For someone who’s easily impressed, I’m still really, really impressed!”

Long and short, Alice’s tumor is gone. He explained that aggressive tumors tend to respond particularly quickly to radiation. I guess their retreat is in proportion to their advance. He went on to tell us about a particular mutation in a certain protein in her brain’s stem cells that open the door to tumor formation. Basically (my interpretation once again – don’t go to your garage and try brain surgery using me as a guide…) radiation made the tumor go away, but the door is still open for it to come back. They are still trying to figure out how to shut it; how to repair that mutation. But that’s why it always comes back.

I’m in awe of our Creator as I think about the complexity of our bodies, particularly our brains. The more I learn about them, the more it seems improbable that any of us are able to live at all! There’s just billions of little tiny pieces that have to be working correctly, and if not… well, this kind of thing happens.

It was fun, though, to see pictures of her brain without cancer. And since he made the scans available to us, and said we could share them, here’s where we’re at:

MRI pictures; left one is from 9/23, right one is from today. What a difference.

The one on the left is from the first MRI back in August. The one on the right is from today. I don’t think I even have to point out the tumor, but in case you’re wondering it’s the big white thing in the middle of the left scan that’s nowhere to be found in the scan from today. The white patch above the tumor (and also in the other scan) is the “lake” of ever-created spinal fluid they made a new drain for during the biopsy. Basically where she is now, save for the thing that caused it in the first place, is perfect. There’s no sign of a tumor; it’s gone.

Dr. Chris put it this way: we knocked off the leaves and branches, but the roots are still there; it’ll come back. But not today. And hopefully not for a long long time. We pray.

Back to my internal conflict, because I’m sure you’re dying to hear about it, ha! I learned something today, and I wish I’d learned it awhile ago, but better late than never. As we sat down over barbecued goodness at Famous Dave’s for lunch, I was pretty subdued, and Michele said “Sorry you’re not really able to enjoy this.”

I like keeping an even keel. I’m prone to swings, don’t get me wrong, but I hate them. And I guess somewhere along the way I figured that this ends on a pretty down note, so there’s no sense getting up too high, lest the downward stroke fall too hard. And that meant I couldn’t really enjoy what really is good news for Alice, and for all of us. Maybe it does come back bad. But today it’s gone.

Shelly and I talked about enjoying, really truly enjoying, the little things. Yeah, there’s this big ugly thing over our heads. But there’s a lot of little things that are really truly wonderful.

Sunday night at Bentleyville by the waterfront in Duluth. Totally worth the drive. The picture is dark because… it was dark! But so much fun. Thanks to Paul and Miranda for coming up with us!

I got a little preview of this epiphany on Sunday night when we went up to Duluth to see the lights of Bentleyville. There we walked through a dreamland of beautiful lights, happy Christmas music, bustling crowds excited to soak in the wonder of the season. It’s truly a festive atmosphere. And I was released to just enjoy the simple fact that God still gives good things for us to honestly and dare I say, righteously enjoy. Maybe they’re smaller than some of the big ugly bad ones, but they’re still good.

So I’m processing these thoughts, even tonight. This was a good day. Perhaps this ordeal still ends lousy, I don’t know. But dampening the joyful moments of today in some sort of effort to dampen pain of tomorrow may not be quite as good a plan as I once thought. To be perfectly honest, I wasn’t sure quite how to communicate to you this particular chapter of our story, and still don’t. I love that the tumor is gone. But I don’t want to give the impression that our sorrows are over, or that Alice is fixed because they’re not and she’s not. Why get so happy about the fact that you got your tire pumped up but you still hear it hissing? But dang it, the tumor is gone, and why not celebrate it, even if only for a season?

Shell talked with me about how many good moments we’ve had of late, and there have been lots. And we’ve enjoyed them. But I wonder if I’ve really let myself enjoy them as I could and should. Paul’s line “sorrowing, yet always rejoicing” has been rolling around in my head today. I’m still working on it.

Lunch today at Famous Dave’s with a snuggly Alice

Alice is essentially 100% physically, neurologically, and cognitively at this point. Except for some little mutant protein doors that won’t close, she’s as healthy as any other little girl. And that’s pretty awesome. I’m happy about it. Happier than I have been. Probably happier than I will be tomorrow, but that’s part of the battle that rages in the soul. Sitting at lunch next to Alice, she grabbed my arm and gave it a big hug, then laid her head on my shoulder, just getting close to me. Those are good times. Not all times are good, but some are really, really good.

I was talking with Pastor Bob yesterday, and he reminded me that there’s no going through a storm like this without getting knocked around, beat up, and scarred. There’s no cheating the system, no path through that doesn’t really and truly hurt deeply; indeed, the pain seems to be one of God’s primary tools for doing whatever it is He’s got in mind.

So, we’re probably going to get beat up. Ok. But I’m really going to make a concerted, yet unforced effort to enjoy those moments when our ship pauses for just a moment on top of those giant waves which are just high enough that if you stand up tall and look hard, you can just see the sun coming up over the horizon. Yeah, the ship is going back down again. And it’s gonna get dark and dangerous. But it’ll come back up, for one more life-giving glimpse, and someday, we’ll make harbor, and the storm will be no more.

Thank you for praying. Shelly said to me today, “I can feel we’re being prayed for.” It’s true. We’re so grateful. Thank you for encouraging our hearts; we need it! Thanks for the kind words, the kind gifts, thanks for being God’s gracious gift to us. Thanks for enduring my ramblings as I write to process life and what to make of it.

top photo from bedtime this week. 

Jo Bishop hosts an online community for families with DIPG. It’s heartbreaking, but worth checking out if you’re interested in seeing what Alice and others with DIPG are up against. You can find it here

 

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