First, Shelly and I have been absolutely overwhelmed by the outpouring of love and support. As I write that, it sounds so cliche, so let me try again. The bride of Christ, often belittled and maligned for her dysfunction, has dazzled us with her tenderness, compassion, and affection. Jesus doesn’t marry down, and although His work with His bride isn’t done yet, we’ve been privileged to see something of what He sees in her, and I have to tell you, it’s awesome.
Let me catch you up… Monday was Alice’s birthday. What a bittersweet day that was. I always take the kids for breakfast on their birthday. Rock Creek Cafe. I barely managed to hold it together as I wondered if this would be the last one I’d ever have with Alice. I gave her all my bacon when she wasn’t looking. She held one up, “Want one Dad?” That’s Alice. She just knows how to do it. And she can eat pancakes, my word. A plate-sized, 1/2″ thick pancake, and she ate most of it, with three strips of bacon and a cup of apple juice. That’s my girl! Ate more than me that morning, that’s for sure. I gagged down a couple eggs and some toast.
We opened the door of the house, told those we invited to make no appointments, but just come. The last thing I felt like doing was scheduling visits. Screw it, just come when you can and we’ll figure it out.
Friends, relatives, (all the cousins on the Reed side) hugs, tears, tons of presents, and lots of prayer. When my Dad arrived at the house, I ran out to meet him like I was 6 again, buried myself in his arms and wept. It felt so good. Every one of the five pastors we invited came, from Apple Valley to Crosby, and prayed for us as our friends, as our brothers, and as God-called men of prayer. God bless these men for their service to us.
My wife stood like a marble pillar of strength, even through the tears. I’ve marveled at her these past couple of days as if we were dating again, she’s been so helpful to our whole family. I often say that I married her because she was so blonde and so beautiful, and later found out the incredible depth of her qualities as a wife, mother, friend, and child of God. Most people think I’m joking, I’ll let them think that. I won the wife lottery. I had no idea what I was getting, and I got the best.
Tuesday we closed the door, and just spent the day as a family. Alice played “Minecraff” with her brother and sisters, and we took a trip to Chisago City to hang out around a hotel pool. Alice loves the water more than anything. But she was so tired. It was wonderful that she wanted to curl up in a towel and sit in my lap, and awful that she didn’t want to spend hour after hour in the water, like the Alice of two months ago would have done. But it was good to be a family.
Wednesday was more family, this time from Shelly’s side. But it was tough. Alice seemed so weak. We cleared the house out at 5:00, sending home siblings, parents, and cousins. It was hard. Alice just didn’t have much left in her. It was a really, really dark night. By Shelly’s request (and I include that detail to my shame and her everlasting credit) we gathered as a family in our girls’ bedroom, and prayed together. How sweet it was to hear my kids storm the throne room of heaven on their sister’s behalf. I prayed that we could trust that God loved Alice more than we did, even if He loved her differently than we would like. And they prayed similar prayers, in their own words.
Though we felt so utterly miserable, our misery has been tempered by the encouragement and prayers of God’s people. We feel it, even in our darkest hour. We are stunned by the number of hearts stirred to pray for her. I say that to my shame too – I know something about desperate prayer now, and I see people desperately praying for my daughter. I know how incapable I usually feel to enter into other’s sufferings with them, and I marvel at the ease with which other’s have entered into our sufferings. I have so much to learn, God help me.
We headed into Wednesday night in the lowest of spirits. We’d seen Alice seemingly deteriorate before our eyes. Would we even have another week? Those were the thoughts. By this time though, we could hardly cry. How could we make it through the night? Before bed, I had to take a bath with Alice and give her a pre-surgery scrub-down. After hearing biopsy horror stories (and I wasn’t going looking for them, either!), I wondered if I was preparing my child for the end. How dark are the places the mind goes sometimes.
And then God’s grace began to break in. We slept, and slept hard. All of us. Alice between me and Shelly, 4-1/2 week old Violet in the crib beside us, our distraught older four, we all slept. It was incredible.
Thursday morning dawned, and I got Alice’s steroids ready. Four little pills, halved, smashed, and sprinkled on a spoonful of honey. As I walked over to the bed to wake her up, I remembered… Crap, they said she couldn’t have honey, only juice. Waste not, want not I say. So I stirred in the honey into some warm water, added some white grape juice, and gave it to her. She was sleeping so hard, she drank half of it, fell asleep for 20 more minutes (I didn’t have the heart to wake her up; Alice falling asleep in the middle of a cup of juice is akin to the Levite stopping for the wounded man on the Jericho road, it doesn’t happen!) then awoke and finished.
When she woke up, the light was back in her eyes, at least a little. She played more Minecraff while Shelly and I packed up. She laughed, she teased, she owned the room again. It was wonderful.
This will make us sound like something we’re not, because sadly this isn’t normal for us, but Shelly took to the piano and we sang “Behold Our God!” (for me) and “Jesus Loves Me” (for Alice). It was awesome. We felt a peace and a calm, on this of all days. We’ve taken to reciting Psalm 23 as a family, which we did, then crawled in the truck instead of the van so Alice could sit in the front between Shelly and me (yeah, probably illegal, but screw it, we are taking every minute we can! Judge me if you like, I don’t mind!), and away we went.
God bless Keith and Paul. My brothers made arrangements to meet us just off the freeway on the way down and pray for us. They cried as the three of us, the Reed boys, huddled in the Park and Ride, and asked God for mercy. Alice gave them a hug from her perch on the front seat, and off to the hospital we went.
The staff here (as I’m writing from the ICU) has been incredible. Alice’s neurosurgeon spent at least a half hour, maybe longer, walking us through what he saw, what he wanted to do, and answered the questions I’d written out the night before. He is absolutely amazing.
Shelly and I had decided that it appeared to be God’s providence that led us to the place we were, the doctors we have, and we felt a tremendous peace entrusting our little girl into their hands. We had our questions, and some of them were hard, but they were answered so wonderfully well.
Our neurosurgeon showed us Alice’s MRI, and what he wanted to do. He explained the procedure so well. One of the things we didn’t anticipate was that he wanted to drain one of the “lakes” of fluid in her brain. One of the common ways to do that is run an overflow tube (this is my construction-worker interpretation talking, I’m not a brain-surgeon!) from the lake out of the brain, and run it down into the abdomen somewhere. But his plan was to punch a drain in the lake (my words, not his) on the front side of her tumor, since the river coming out the back of the lake had been pretty much dammed up by the cancer. Amazing how God designs these organs. The new drain would find its way down into the same old riverbed “south” of the tumor, and her brain would figure that out.
Best case scenario, since he was in her head checking out and draining the lake with a camera and some other stuff all squeezed into a 2mm hose (3rd ventricular endoscopy, that’s what this procedure was called), he’d try to take a short trip to the shore of the lake and grab a piece of the tumor, so he wouldn’t have to do the regular biopsy, which comes from the lower part of her head, and is essentially running a blunt needle straight through her brain into the tumor (for you carpenters, think of dulling a nail so it doesn’t split the end of a board, and you get the idea).
Among the questions I asked him was simply, “If Alice was your daughter, knowing what you already know about her case, would you do this?” He looked at me and said, “Yes, yes I really would. This is going to help her.” I felt he meant it, and Shelly and I both felt greatly at ease.
I also asked “What do you think this is?” He said they were fairly sure, though not perfectly confident, that this was a DiPG type tumor. That’s the nasty one, and the prognosis with it is quite grim. But they don’t know for sure. Five days ago, not knowing what was going on was so frightening; today not knowing seemed somehow comforting.
I got dressed up in a big white suit, funny hat, mask, and booties for the walk to the operating room. I actually got to walk there twice. In a reminder of the futility of man’s work, and the inescapable reality that something will go wrong no matter what we’re doing, we marched straight into the OR instead of to the CT scan, where they were going to make a digital map of her head, couple it with the MRI, and use that to guide the scope into her head. The operating room isn’t a good place to say “oops,” but it was the best time in the worst room, I guess. So out of the OR, down the hall (and I have to say, the hallways connecting the OR’s are much scarier, more industrial looking, and much more “businesslike” than the rest of the hospital hallways!), into a tiny elevator with Alice in her bed, a pregnant nurse pushing her, another attendant, and a random passenger. Claustrophobia, anyone?
I was so proud of my little girl as she entered that giant donut-shaped CT machine. Somehow she managed to still recognize me while I was in my silly white suit and ugly blue hat (called me “Baymax” from BigHero6), and still knew me when I added a lead apron covered in Dalmatians to my stunning attire. She hadn’t been sedated, and needed to hold her head perfectly still on her way in and out. I got to stand by her and hold her chin gently as she went in and out. I recited Psalm 23, and as I got to “Surely, goodness and mercy will follow me all the days of my life…” it was over. She was amazing.
Back to the OR. For real this time. I held her mask, first away from her face, then nearer and nearer (I’d get 5% of his pay, the anesthesiologist told me!) until her eyes rolled back, and she fell asleep.
I took off my silly suit, knelt down in the little room they gave me to change, and prayed once again for Alice. But it wasn’t desperate this time. Today was a peaceful day in our souls.
We even ate lunch. How remarkably odd that we wheel our little girl into a room, and while we eat lunch someone performs brain surgery on our daughter. What a weird world we live in. But we could eat. We wanted to. Little graces.
The doctor came in with a big smile on his face. It went better than expected. He sat down with us, and said he’d been able to put a new drain in the lake, and it was a good one, it would work, and this would relieve some of her symptoms. We felt like, for a little while anyway, we might get our little girl back. I hadn’t felt a thrill of happiness for a week. I have to say, it felt great. He said he took the camera to the edge of the lake, and there was the tumor. He got 6 samples. Tiny, but he got them. No need to do a regular biopsy. Another little grace.
He asked if we had any questions. I asked “Can I give you a hug?” Sure, we do hugs! So I hugged him, and I cried for joy. I think I hugged and cried too much, because I heard him quietly say, “ok…” so I let him go. But God bless that dear kind ridiculously skilled doctor, even if he doesn’t like big long tearful hugs. I forgive him with all my heart. I wonder if insurance doesn’t pay for hug time. ha!
Alice woke up, asking for juice. So we gave her a cupful. And another. She wanted more. Whoa, hang on camel, let’s see if this stays down. It did. So more juice. And for good measure, one more, this time I watered it down. She didn’t care. Down the hatch. That’s my girl.
That’s where we are tonight. It’s been a good day. If we look beyond today, her future still looks mighty grim. And we’re okay with that. Today God has proven Himself faithful, and the little mercies we received show us He still cares. One of those mercies is that we are both absolutely enjoying today. We got today. Tomorrow has enough trouble of its own, but that’ll care for itself. We got a win today. We’ll take it. God be praised.
Thank you for your tears, and for your prayers. Your labors have not been in vain, in the Lord. If all goes well tonight (and they just took her off blood pressure meds, so they are going well tonight!), we get to go home tomorrow. We’re so happy. It’s a happiness we’ve not experienced before. It may be doomed to sorrow, but tonight we don’t care. God has closed our eyes to the future, so we can’t see it, but more importantly, we can’t feel it. We are trusting Him with it, and we’re good.
— picture taken tonight, Violet hanging with big sis, Alice is guzzling more fluids and watching Toy Story. Good stuff.
note: I hope the Common Slaves don’t mind me hijacking the blog, replacing articles of theological interest with a sort of journaling of my daughter’s current ordeal. But what is an ordeal without theological interest? And what is theological interest without an ordeal? -jr