I left our saga in “Limbo Land,” the land of unknown between initial diagnosis and confirmation/prognosis. I’ll pick it up there and catch you up…
Last Monday or Tuesday morning, Alice woke up particularly irritable and ornery. I wrapped her up in a blanket, then in my arms, and as we laid on the couch, I figured I’d try to make up a story to tell her. Lewis did that with Narnia, so how hard can it really be?
I didn’t get far, but managed to come up with a frog she named “Ribbit” who went fishing. “Dad, I wanna go fishing.”
“Dad, I wanna go fishing.”
“Dad, I wanna go fishing.”
This is how it goes. She gets something in her mind and it doesn’t leave. But she’s not demanding, not entitled, just persistent. I knew my dear friend and brother in Christ Larry had a special place in his heart for Alice and fishing, so I asked him to take us.
Actually, I took a video of Alice saying “Please Mr. Larry can we go fishing?” It wasn’t fair to him, he didn’t stand a chance. Of course he’d take us fishing! So we set a time a couple days out, and Alice patiently waited.
In the meantime, we had good times and bad. On the one hand, we wanted to do fun stuff, on the other, Alice was too tired to enjoy it, and was pretty much done being “out.” But one afternoon when we couldn’t stand just sitting around anymore, Shelly asked to go to a state park. We went to Banning State Park up in Sandstone. Alice wasn’t crazy about it at first, and moped and griped for the first 15 or 20 minutes.
I wound up spending those first 15 minutes talking to someone from the neurology department answering questions about her recovery from the biopsy procedure. Surely this was going to be a failed outing.
But then it began to turn for the better. Alice perked up, my phone call ended, the other kids started running and playing on the banks of the Kettle River, swollen and raging from four inches of rain the night before. It was really a sight to see. I tried, with limited success, to avoid thinking that a Job-like calamity was befalling our family these days and I was going to be watching one of the other kids swept downstream. Ah, how hard it is to just enjoy life, when it seems so incredibly fragile!
We managed to get a good family selfie in, and it kind of captures our enjoyment of the day. It was fun to see Alice perk up and enjoy watching the water, try out the trails a little bit, to watch the other kids climb around and do stuff kids do, pitching rocks into the river, giving their mother heart failure, and all those things that need to happen at a state park.
On the way home, we picked up some steaks for the grill. We don’t splurge like that often, but Alice in particular loves meat, so why not? It made for a good evening, and we enjoyed it greatly. Alice ate as much steak as we’d allow. This steroid-driven appetite is crazy. It’s like there’s no “full” on her tummy gauge. So no matter how much she eats, she always wants more, and that’s miserable for us.
Next day was fishing day. Alice was so excited. Larry took us to Lewis Lake, where he’d done the no doubt arduous and sacrificial labor of “testing” the day before, just to make sure we’d catch fish.
Alice loved fishing. It was a day so perfect it couldn’t have been ordered better off a menu board. The temperature was Laodicean, (neither hot nor cold) and the lake looked like a sheet of mirrored glass. She sat in my lap, cranking in fish like crazy for an hour. The only time she isn’t talking about food is when she’s found something that captures all her attention. This was it. She smiled, laughed, and for a few blissful moments we forgot about the cancer.
After an hour, she wanted to rest. So I laid out a blanket on the back deck of the boat, set her on it, threw her blanket on top of her, my sweatshirt for a pillow under her head, and she slept. Bittersweet, I guess. Sleeping kids are really adorable, and nobody understands the value of a good nap as much as I do! But there’s also something unnatural about a 4yr. old doing what she loves doing, but just doesn’t have the gas to do it for long.
I write all this, not to bore you with things that aren’t particularly important, but to give you a sense of how we were feeling – our Tuesday meeting to get the biopsy results and prognosis was looming, and we tried not to think about it, and in some ways it felt like it might be our last week of normalcy as we knew it, and we just wanted it to last forever.
I told the dear folks at Lewis Lake on Sunday that if Tuesday didn’t arrive for 10,000 years, that’d be fine with me. I knew it had to come, and we were enjoying that sliver of hope that it might be better than we expected, but since we weren’t expecting much in the way of positive, we were happy just to let it not come as long as possible.
But come it must, and come it did. Tuesday morning we got up early, spent a few minutes as a family reciting Psalm 23 and praying together, loaded up Alice and Violet, sent the older 4 up to my brother Paul’s place (how nice to have a driving daughter!), and headed to Minneapolis.
Alice’s appointment was at 9:45. We arrived at 9:30. As we got on the elevator, we were joined by a man and his son, about 11 years old, and a lady and her infant son, who was about Violet’s age – maybe a month or two. They, like us, were heading to the 9th floor.
The ninth floor, at least as far as that elevator is concerned, is kids cancer center. You don’t go there if you don’t have cancer.
As I said, we arrived 15 minutes early. In one of God’s fascinating little twists of Providence, we sat in the waiting room for 45 minutes until we were seen. I think we needed those moments, because for 45 minutes we saw kids of all ages and all colors walk in and out of that place. We saw babies, toddlers, kids Alice’s age, young teenagers, kids without hair, kids with masks, kids with poor eyesight, and one sweet little black girl about 10 years old who looked scared, but was putting a brave face on. It reminded me that indeed, as terrible as this is, it is a trial “common to man.” It gave some perspective, and I needed it. God be merciful to these little ones!
We were called back, did the whole height/weight/vitals thing again for the zillionth time. Alice tolerates them.
Dr Chris, the brain tumor specialist we’d met back on that first Sunday morning, Dr. G., who’s been so good to us all throughout this process, and Dr. Tammie, who we’d never met before, all came in to see us. The moment had come; we couldn’t put it off anymore. My heart pounds just recalling the moment.
Here’s what we heard from Dr. Chris, in a nutshell, carefully putting my own words in his mouth…
“The biopsy confirmed that Alice as a DIPG tumor. (He explained the letters; it’s Digressive something something Glioma. Google it if you like…) It’s a really crappy tumor. It’s aggressive, and we just haven’t found the key that unlocks it. It’s intertwined with all the nerves in her brain stem, so we can’t go in and take it out, which is the best thing to be able to do. But we can’t do that. If we do nothing, she’ll have two, maybe three months. We still treat these the same way we’ve treated them for years, through radiation. If we radiate this, it’ll shrink down, and Alice will have six, maybe eight months of good life. Then it will come back. That’s all we can do.”
What do you say? Ah crap, I guess. We expected something like this, but it still hurt. Hearing about likely time remaining, using the phrase “quality of life,” and once again envisioning an empty seat at the table wrenches the soul.
We heard about some clinical trials for this kind of tumor, and Dr. Chris explained what they were, and why they were closing – they just haven’t been able to beat this one yet. Bless him for looking into them, nationwide, for us.
I let slip the word “hopeless” somewhere in our conversation, since that is how it felt (and often still feels), and God bless Dr. Chris and Dr. Tammie for pointing upward, and saying “there’s always hope.” Every time I’ve turned to despair, the Lord has put someone in my face to draw my gaze upward.
It turns out Dr. Tammie has been following Alice’s case through the hospital records, knowing we would be coming to her, but a friend of hers had also sent her this blog along the way, not knowing Alice would be her patient. So how cool that even though we were meeting her for the first time, she’s had an eye on us from the medical side and the personal side already. Dr. Chris said she’s on all the prayer chains. We’re so thankful for her, and again, for all the doctors and nurses who have been absolutely phenomenal to us.
We talked about radiation. Five days a week, sedating Alice, putting a custom-made mask over her head that holds it perfectly still, and blasting the crap out of this thing (not a technical medical term, you understand) with incredibly accurate beams of radiation, if I understand correctly, coming from multiple angles, all designed to hit the tumor and essentially nothing else. This buys us some time. That’s where we are. Redeeming the time. The days are indeed evil.
Dr. Chris walked us through the difference between “what’s best for Alice” and “what’s best for us.” When the tumor comes back, there are things we can do to eke some extra days out of her life, but they make life very miserable for her. God help us, we want what’s best for her, but no doubt it’ll be hard to not give her what could prolong her life, even if it’s just briefly postponing what seems, at this point, inevitable for a few more hours.
After they left, my wife said to me, “All night long, I kept waking up with the song ‘He Will Hold Me Fast‘ running through my head, and I thought, ‘Why can’t it be a different song??'” Indeed. Shelly says more in one sentence than I can say in a book.
We returned home via Famous Dave’s to feed our ever-famished daughter, tucked her in bed for a nap, and told the kids the news. That was tough. And yet, I don’t know if it’s because we’ve been expecting this kind of news, or if it’s because we’re acclimating to this new life, or if we’re just emotionally drained, or a combination of the three, but we don’t cry so much anymore. We just don’t have it in us. I for one feel bad about it sometimes, like I must have lost my soul somewhere along the way, but it’s just how it is.
This morning we returned to the hospital where Alice got another CT scan, this time to “map” her head for the special mask they’re making, and they installed a little “port” just below her right shoulder. It’s more or less a “quick-connect” for IV’s and such. It’s buried below her skin, and they can just poke into it to administer the sedatives she’ll need for getting radiated, and whatever else. I guess if her life involves getting put to sleep at least 25 more times, this will be a help. But it’s tough.
She understands that she’s going to the doctor, but hasn’t yet made the connection that she’s sick. I’m glad – her innocence and ignorance is our bliss.
The remainder of this week is quiet for us. I get to preach on Sunday, and I’m very much looking forward to it. My assignment – “Your Father knows how to give good gifts to His children.” No joke. Pastor Bob said I could trade it in for something different, but I think there’s no greater text to wrestle through. If I can’t look into the face of my little girl and know that all gifts from my Father are ultimately good, I don’t think I have any right to stand in a pulpit and tell all my fellow sufferers (because we are neither the first, the last, nor the greatest of sufferers, by any means!) to lean heavy on God’s goodness.
Speaking of leaning… We are still praying what we’ve prayed since the beginning – “Father, we wanna keep her. Really bad.” I wrestle in my soul how much weight I should put on God’s healing hand. I’d stake my life and rest all my hopes on the truth that He is able to take this cup from Alice; I don’t place quite so much weight on the hope that He will take it away.
I’m helped by three phrases from the Bible – “who knows,” “if not,” and “nevertheless.”
David’s son was dying, and he begged God to save his life. God sent the affliction, God could remove it. I take it that David placed all his weight on God’s ability. Yet he said, “who knows whether or not God will be merciful?” I think that means he didn’t lean too heavily on “God will fix this.” Hope, yes. But a hope that, if not realized, didn’t leave him tumbling to the floor, having nothing else to hold him up.
Shadrach and company were heading into the fiery furnace, and they told Nebuchadnezzar, “our God is able to deliver us. But even if he does not...” God is God, whether they walk into the furnace and have a leisurely chat with Jesus and walk out 10 minutes later, or if they walk into the furnace and are incinerated. “God is able” will hold all the weight you can put on it. “God will” can’t bear that same weight.
Jesus was staring at the cross; His own horrifyingly brutal execution. And He prayed, “If possible, take this cup from me, nevertheless, not as I will, but yours be done.” Jesus could rest all the weight of the world on the Father’s goodness, love, and ultimately His good purposes. But the notion that the cup could be removed, while it could carry some weight and give perhaps some comfort, was never meant to bear that much weight.
Sometimes the hope “God will” doesn’t come through. Sometimes it collapses, and the one whose soul is resting only on that hope will fall with it. “God is able” is where we’re living. And we’re still gingerly resting on “God is willing,” but we’re finding that we aren’t placing as much weight on it as maybe we did even a few days ago. We hope, we pray, and we believe beyond a shadow of a doubt that God is able to take this cup from us. Will he? We hope.
One last thought – I keep thinking of the little line from Jonathan in 1Sam 14:6, “It may be that the Lord will work for us, for nothing can hinder the Lord from saving by many or by few.” We’re going to do the best we can to fight this thing with and for Alice. We are, by God’s grace, prepared to accept losing her, whenever God may ordain that day.
Even though I’ve planned her funeral a thousand times in the last couple of weeks, I am constantly brought back to this: We still have her. She’s sleeping in our bed, as I write. In an hour, I’ll lay down my head beside her, she’ll wake up a little bit, put her arms around my neck, I’ll say, “You’re so special, Alice,” and she’ll say, as she always does, “You’re special, Daddy.” And so we’ll keep at it. We’ll hope and pray and figure out our way through this, knowing that God is not hindered by saving with many or few. We’ll do some things right, some things wrong, we’ll offer up some “many” and some “few,” no doubt, but we take heart that we serve and love and worship a God who can save no matter what.
We hope He does. And we pray, with Moses, the man of God,
“Make us glad for as many days as you have afflicted us.” Ps. 90:15a
God help us.
Thank you so much for all your notes, texts, comments, cards, and the overwhelming expressions of affection and love. We read them all, we love them all, we draw so much encouragement from them. We are so blessed. – joe, michele, natalie, emily, jojo, kylie, alice, and violet.
– top photo is another Alice selfie, by my request, taken on the way out the door Tuesday morning.