Alice: Radiation, Week 1

Well, it’s Friday night, and we made it through the first week of radiation.

And there was much rejoicing. *yay*

Following the biopsy results last week we tried to enjoy a couple of hospital-free days as we geared up for the first week of daily runs to Minneapolis.

Here’s what “enjoy” means these days: It means trying to live with the mentality that Jesus talked about: “Do not be anxious about tomorrow, tomorrow has enough trouble of it’s own.” “Living in the moment” seems like a cheap cliche used to describe those who make foolish choices based on short-term pleasure while ignoring the resultant long-term pain. For us, “living in today” means we’re learning that thinking about tomorrow is like strapping a cannon to the soul and throwing it off a ship. It just sinks really fast, and keeps sinking, until we cut the straps of tomorrow’s weight and get back to living today.

I was so excited to get to preach Sunday. “All God’s gifts are good.” I even finished my sermon on Saturday night, and thankfully only had to redo most of it several times. I woke up Sunday morning to find my emotions coming out from under a sedation, of sorts. Most of the week I’d felt pretty numb. Not normal, either. Just numb. Or, as Pastor Bob said to me, “emotions just get tired and quit working sometimes. It’s okay.”

Sunday morning they started waking up. Almost 4 years ago, when Alice was just 3 months old, I bought a really nice Bible that was a good traveling size. Then I had each of my oldest 4 kids sign the front page, so I’d have their names in their handwriting.

My Bible. Alice’s “O” is how she writes her “C.” The “A” is the only letter you’re guaranteed with her signature, the others are purely at her discretion. I managed 3 of 5. Not too shabby.

I was looking at that page Sunday morning, and realized that Alice’s name wasn’t on there, and that there was one more line available… so, since she’s learning to write her name, I asked her to do so. She did, and for the first time in a couple of days, the tears started to come.

 

Then we got to church and sang, “You give and take away, You give and take away, My heart will choose to say, Lord blessed be your name!” Alice didn’t want to stand, so I sat there next to her, with my arm around her, trying to sing, mostly crying, wondering if I would actually be able to get up and preach or if I’d just break out sobbing (which is a very spiritual thought to be having, of course!).

The dear folks at Lewis Lake have been so incredibly kind, supportive, and generous to us. I say that all the time, but it’s true, and continues to be true. They’re feeding us like crazy; it’s awesome. The broader body of Christ has been so good to us too. We have received such kind notes here on the blog, and also our mail has come with cards, letters, and exceptionally generous gifts from brothers and sisters we’ve never met. We’re blown away. And so very thankful.

One of the things we’re trying to do is keep Alice moving. She’s very tired, and hates walking for any length of time unless there’s a really good reason to be doing so. We walk with her up and down the driveway. She does love opening cards, so the trips to the mailbox have gotten a little more motivating for her, and she happily tears open all of them.

Radiation is actually pretty boring, from our side of things. Here’s how our days go: We arrive at the hospital most mornings about 7:00, go to a room in the sedation/imaging section where the nurse takes vital signs, we meet our anesthesiologist for the day, load up the bed with a couple little machines, I crawl in Alice’s bed and put her between my legs, put SpongeBob going on my laptop (the folks at Lewis Lake will no doubt be happy to know the super-expensive laptop they bought me is being put to the noblest of uses, playing a lot of SpongeBob for Alice…), and away we go. We are wheeled out the door, down the hall, into an elevator, go down a floor, down another hallway, past the “control room,” down a winding, slightly downhill hallway where we pull up to whatever that big ugly radiation machine is, we are wheeled beside the table, confirm names and birthdates, the two radiation guys are there getting things set up, the anesthesiologist and his/her helper are there doing things, the nurse is doing her thing, and once in awhile someone else will be there just to help Alice. So it’s a pretty busy place down there.

They hook up a syringe full of white fluid to her “quick connect” (my term) and once I see the nurse start injecting it, I wrap my arms around my little girl, tell her I love her, that I’ll see her soon, and that she’s so special. Within about 5-10 seconds she’s out. She’s lifted off my lap, I gather up her blanket, her “bear mask,” the computer, maybe a teddy bear that made it for the ride, and I head back to the room.

It stinks when I think about the fact that as soon as she’s set on the table, they put this horrible mesh mask over her face so she doesn’t move (think a hockey goalie mask, for zombies, and you kind of have the idea), everybody bails out of the room, up the inclined hallway and hides out in a little room, leaving my little just-turned-four year-old all alone while they blast away (not a technical medical term, I don’t think) at this tumor with beams of radiation. I’m glad she’s asleep for it.

About 20 minutes after I get back to the room where Shelly and Violet are waiting, they wheel Alice back in, the anesthesiologist gives me the thumbs up that everything went swimmingly, and within 5 minutes, she wakes up. Usually the first thing she does is claw at the oxygen tube in her nose until it’s taken away, and then says, “I jis’ want some Cheerio-Bear.” Translation: Cheerios with honey from, of course, a honey bear. Her all-time favorite breakfast.

I’ve taken to bringing three bowls, one for Alice, one for me, and one for Shelly, and some extra Cheerios and milk so we all have breakfast together. It’s actually kinda great, even though Cheerios were never my thing. But they taste pretty great when we eat them with Alice. And lots of honey.

After breakfast, it’s one last set of vitals, unhook whatever is hooked up, and out the door. In and out is usually between 90 minutes to two hours. Usually there’s an emergency potty-stop for Alice and semi-emergency need real-food-for-breakfast stop for me and Shelly somewhere about halfway home.

Yesterday was such a beautiful day we decided to make a run up to Duluth to hang out by the lake and pick rocks, get the other kids out of the house and get some fresh air. Alice was really cranky, really tired, and we were so disheartened and discouraged. It just felt like always winter, and never Christmas.

About halfway up to Duluth, I heard a commotion broke out in the back seat. That’s actually quite unusual for our kids; I mentioned before I won the wife lottery, I also won the children lottery! But something was amiss. I turned around to see a can of Cherry Pepsi spraying all over the place. Being the wise and mature father of the bunch, I said something very wise and helpful, like, “I know it seems like a really good idea to just hold that can over the floor and drip pop everywhere, but it’s actually not.” My sagacity in those moments is somehow never received with the same grace and class I give it! I even did the honorable thing and rolled down a window so it could be held outside. In an instant, Natalie just chucked the sucker out the window.  Cars behind us? Silly, pointless details! We laughed; it was funny. And we all needed a good laugh.

Of course the family judge (me) felt the need to hold a brief trial. Who did that? “Not me!” Nobody did it. I should have known. There were 8 people in that minivan, yet somehow that can exploded all by itself, having never been touched by human hands! I thought to myself rather cynically, “Great, here we are, we’ve been begging for a miracle, and the only one we get is this supernatural exploding can of Pepsi!”

Resting on the shores of Lake Superior

Duluth was hard for Shelly and me. Alice used to love this sort of thing, but she just didn’t have the gas for it. I carried her to the water’s edge and set her on her feet, she threw two rocks into the lake, and laid down on a blanket for the next two hours. It was fun to be there with the other kids, and we got some good pictures as a family always does on Lake Superior, but it was hard to see our little Alice, typically the life of the party, hardly able to muster the energy to sit up. We drove home greatly discouraged. Night time is the worst.

 

Today after radiation we had an appointment with Dr. Tammie. We like her so much. She helped us know that when radiation is done, we’ll see the old Alice again, and that lifted our sagging spirits considerably. We talked a little bit about the menace this wretched tumor is, and it really is wretched. She let us talk through our questions, our concerns, she helped us think through the alternative treatments that are so often presented to us (“I know all about them; I’ve researched all of them. Believe me, if there was any of them that actually worked, I’d be all over it”), and we chatted about taking a trip somewhere warm, sandy, and desolate when this is over. We’re kind of a family of hermits – we like going places and doing things, as long as no one else is at that place or doing anything there. But I digress…

Fishing with Larry and Angie!

On the way home today, I texted my dear friend Larry to see if he would take Alice (and me, naturally!) fishing. He kindly obliged, and Alice had so much fun on the lake. She was still tired, and slept for a bit on the boat (not an entirely unChristlike thing to do!) but really had a smashing good time, and it brought so much joy to my heart to see a few little glimpses of that steal-your-heart-every-time personality shining all the way through the steroids, the sedation, and the cancer that are all working with and against each other inside that little body. And yes, she caught some fish!

 

I haven’t quite figured out how to think about this just yet, but the type of tumor Alice has, dipg, is essentially lethal, essentially all the time. I say “essentially” because somehow it sounds less threatening than just saying it kills pretty much everyone who gets it, which is more accurate. And that sucks something terrible. The available treatments can knock the tumor down once, maybe twice, on rare occasions even more than that, but the treatments themselves are difficult to endure, and the tumor itself just won’t stop coming back, and back with a vengeance. And so, we’re basically looking at one possible outcome, barring Divine intervention, and it’s hard to think about.

But the other side is this: I guess we don’t have to spend a lot of time wondering what’s going to happen. We don’t really have to carry this great burden like, “Are we doing the right thing?” There is no right thing for this, at least if “right thing” means eradicating it, because it just won’t go away. And in some sense, it’s nice not to have to bear that weight – “If we do this, or don’t do that, and don’t get the results we want, are we going to feel guilty for making the wrong choice?”

In other words, we don’t have to be desperate. In a strange way, I’m thankful that this particular tumor doesn’t leave room for desperation. If both wings fall off your plane, there’s no sense desperately trying to manage a safe landing. Just enjoy the ride as best you can. More than that, though, I’m thankful to the Lord Jesus that there’s nothing to be desperate about, anyway. Jesus Christ, in space and time, went into a grave as a dead man, and walked out of it as a live man, and told us He’d do the same thing for us someday. Alice gets in on that, so I’m good. I’m good, because she’s good. Resurrection is a really good thing. I’ll be needing it myself in the not-too-distant future I’d imagine. And I’m so glad the resurrection of Jesus actually happened.

I’ve never been in a position of much leverage with the Almighty; it’s not like He’s ever owed me a favor. But I did pray in those early days, “Father, you can take her, but I want one thing from you… I want to feel that I get her back.” I know I will, but I really want to feel it. The historicity of the resurrection has done that for me. That singular event which bridged heaven and earth means more to me these past four weeks than it ever has.

I still pray for a miracle. We pray every day, “Father, we wanna keep her. Be merciful to us!” But we do get to keep her. So I also pray, “Lord, keep us. Keep me, my dear wife, and keep all my kids. Don’t let us go. Don’t bend us so far we break. Don’t lose us, Father. Give us what we need to keep trusting in your goodness and your grace.” After all, all the Father’s gifts are good. We believe that. Jesus said they were good, and He ought to know. He’s been given everything. And He said He’d share with us. He’ll even share with Alice. Maybe especially with Alice. I’m happy about that.

Thank you, all of you, for your many prayers. Keep praying for us. We have four weeks of radiation to go, and they’re going to be grueling. Alice has to go in and out of sedation 20 more times. I can’t hardly imagine. We’re so looking forward to it being over. And we’re hoping it delivers us what it promises. God knows best. We trust him to guide us, to care for us, and to deliver what He promises. And He promises all things will work together for good. So be it.

if you care to listen to my sermon from Sunday, “All God’s Gifts are Good,” it’s here

top photo is an Alice selfie, bear mask and all, taken for her mother, about 2 minutes after waking up from radiation on Monday. 

Advertisement