Alice: Radiation, Week 5

If God is for us, who can be against us?
He who did not spare his own Son but gave him up for us all,
how will he not also with him graciously give us all things?
Romans 8:31-32

We’re still figuring out what “God is for us” and “graciously give us all things” means and doesn’t mean. Pretty clearly it doesn’t mean God does what we want when we want it. But we’re learning that it does mean that in the midst of the turmoil of soul, He gradually helps us know He inflicts no pain vindictively, that His love really does never fail, and that we can trust Him for the future, even if the future becomes that which we fear rather than what we hope.

Twenty five trips complete. The last full week of radiation is behind us. Two more trips next week, and we’re done. I’m unsure how I feel about it just yet. Sure, the early mornings, smashing pills into powder then putting them into some juice, waking Alice up to drink it (which she hates more every day), driving 67 weary but coffee-assisted miles to the hospital, lifting Alice’s limp body off my lap and handing her over to the radiation therapist, kneeling by her bedside as she wakes up, breakfast out of a backpack – I won’t miss that much.

But I do very much enjoy an hour every morning sitting beside my dear wife chatting on the drive, usually getting to enjoy a McMuffin with her on the way home (Cheerio’s doesn’t cut it all the way for us!), and enjoying Alice’s smiles and songs coming from the backseat  – I’ll probably miss that.

Alice helping me in the shop this week making some cedar chests, just for fun. I drill the holes, she places the screws. The headphones she calls her “ears.”

More than that though, I think of this tumor like a bomb exploding in her head. That’s probably not medically precise either, but that’s how I think of it. Radiation kind of puts the explosion in reverse motion. So radiation means in some sense things are getting better. Stopping radiation means the bomb is going to explode again. Not today, we hope, nor tomorrow, but in pretty much every case (again I hopefully leave the caveat “pretty much” as though it wasn’t “always,” even though that would be far more accurate) her tumor, her bomb, keeps going off, no matter how it gets stuffed back inside itself. It’s just yucky.

So in that sense, the end of radiation marks, for my mind and heart anyway, a new chapter in our story. We did find out today that the lingering radiation molecules will continue working in her body for at least another month. Then… then we wait. I don’t think we’ll just sit and wait, you understand, we’ll be doing life as best we know how, and jamming as much into it as possible, but to be perfectly honest, it feels like it’ll be waiting. Tick tock… when does this thing go off again?

But that’s tomorrow’s burden, and I shouldn’t be trying to carry it today.

Except we thought maybe it wasn’t tomorrow’s burden.

For the past week or so, once or twice a day Alice had been complaining that her eyes hurt. Or sometimes she’d say they were itchy. But she doesn’t complain either loud or long, and it’s quite possible, we reasoned, that with her major decrease in steroids, her allergies were coming back.

On Monday afternoon Shelly’s Gramma had been taken to the hospital due to some pretty intense vomiting, and just as we arrived at Children’s Hospital around 7:00 Tuesday morning, while I was tending to Alice and doing my minor part in annoying the nurses by hooking up her blood pressure cuff and pulse sensor and whatever else I can do to justify hovering over Alice and keep myself occupied, Shelly was visiting with her parents who were at the hospital up in Duluth. Gramma’s not doing well, they said. Doctors say she has at most week to live.

I went with Alice downstairs for radiation, she was put to sleep, and I went back to visit with Shelly, and we talked about running up to see Gramma. By the time Alice came back, and before she woke up, we got another call. Gramma was gone. She was 85, and got to live at her own home until the last. But she really was ready for a substantial real estate upgrade and a house she didn’t have to maintain – ever, which she at last received.

The hospital staff was so kind to us as this was unfolding around us. Dr. Tammie shifted Alice’s typical Tuesday post-radiation appointment to Wednesday so we could get on the road and head north to see her folks.

The Reed way to take a four-wheeler ride. No one gets cold. Insane amount of giggling, especially from the back row. Uncle Paul at the helm.

Soon after Alice woke up and had a little something to eat and drink (which isn’t much these days; her voracious appetite has completely reversed itself), we headed home, picked up the other 4, piled in the van, and headed up to the Iron Range, 135 more miles due north.

We spent the afternoon and evening with family, hanging out in Gramma’s house. We left  around 7:00, plenty tired from a long strenuous day already, to make the long trip back home – in a dense fog. Typically I wouldn’t care. But somehow it seemed almost overwhelming, and thinking about Gramma’s funeral details made Shelly and I think about… well, you could probably imagine what we were trying not to think about but were anyway.

To make matters worse, while at Gramma’s I’d been watching Alice play with her favorite cousins, and I thought I saw her eyes out of alignment again. I hoped I was just seeing things, so I said nothing. However, on the way home Shelly showed me a picture she’d taken earlier in the afternoon – “Look, her eyes are bad again.” Ah crap. The eyes, after all, were the telltale sign that really alerted us to this mess in the first place.

We made it home, fog and all, and crashed into bed, but our hearts were heavy, and our minds were tired but restless. What’s up with her eyes? Is this all coming crashing down again – and before radiation is even over? Can we take any more thoughts of death and tragedy right now?

Five o’clock came all too quickly Wednesday morning. I stumbled through the morning routine of getting the “pack-pack” ready (Alice’s name for the breakfast-bearing backpack), making a pot of coffee, and other sundry and boring morning rituals. I was hoping Shelly would stay home that morning and get some rest, but like me, she’d rather go down to chat with the Doctor. After all, she said, “if it’s bad news, I want to be there for it.”

When I went down into the radiation room with Alice, I mentioned to the guys down there about her eyes, because I wanted to talk to Dr. Katie, our radiation therapy doctor, about it. She was on vacation. But Brad and Rob, the radiation guys, the anesthesiologist, the nurse and I had a little conversation about it. After Alice fell asleep, I was walking back to the room talking about it with her nurse, and she said to me, “I bet you’ll see Dr. Chris today.” Dr. Chris is the head of the brain tumor team, and we like him a lot, but we’ve only seen him twice – once the day after the MRI, and once when he gave us her prognosis post-biopsy. So we only see him when things are bad. Oh joy.

I got back to our room to wait for Alice’s return. Shelly and I talked a bit, but we were pretty well exhausted in every sense of the word. We’d have cried if we had any tears these days. She had a few, but not nearly as many as she felt like crying, I know.

And then, in a most extraordinary case of really bad timing and miscommunication, one of our daily friends there on staff at the hospital walked in with a book entitled I Miss You: A First Look at Death. She proceeded to talk to Shelly about talking to our kids about death, asked if we’d talked to them about it yet, of course we had, and though she knew us pretty well now and was certain we were able to handle the difficult conversations, this book might be a helpful tool for us.

As she talked, Shelly and I didn’t speak to each other. I don’t think we even made eye contact, but both of us were thinking the same thing, “What in the world is this all about? Are we about to find out Alice’s treatments have been a failure and she’s going to die in the next couple of days? What does this lady know that we don’t???”

Then she said a most clarifying phrase: “I’m sure your kids miss Gramma a lot…”

Ooooh… she was talking about Gramma dying, not Alice. Well, that explains a lot. It really was cool that she cared enough about our family to help us through a situation unrelated to Alice’s condition, but it was confusing there for a minute, and not a little strenuous on the old heart!

After that things began to be a little better. Dr. Tammie came shortly thereafter to take a look at Alice and said essentially, “I’m not worried about the tumor. This is from swelling from the radiation. We’ll bump her steroids back up and this will take care of it.” Okay, we can handle that. We did, and the steroids did.

Alice and Jojo, just after landing. Thanks to Dawn Halvorson for taking this picture!

The week wasn’t all stress and death. When we arrived at church on Sunday, one of our friends came up and said, “My Dad is flying in today, and wanted to know if you wanted to take a ride.” When I hear “flying in,” I think in terms of TSA, extra costs for luggage, and little packages of peanuts. But in this case, her Dad, Don Lillienthal, is a pilot, and wanted to know if Alice wanted to take a ride in his Cessna, the “Ford Station Wagon of planes, as he described it to me.

We went for it. Jojo wanted to come along too, so he rode in the backseat and Alice sat on my lap. It was great. I wasn’t sure how Alice would respond, but she loved every minute of it. We flew to our house, and as we got there, we watched Shelly and the other girls turn into the driveway, and as we circled around, Emily got out and did a huge wave for us. Alice loved that.

Someone came from Memorial Drive Bible Fellowship up in Askov to deliver an unbelievable load of food and a huge gift of money. We were almost dumbfounded… again. We can’t believe the generosity of God’s people – to us, of all people, and the least deserving of any kindness! It’s like living in a totally different life these days, and we’re still trying to figure out how to live it.

Sometimes it seems like we have a different Alice every week. They’re little things we notice, but they are “things.” Before radiation, and maybe for her first week of it, her drawings were of “houses,” which consisted mostly of drawing connecting squares and lines. Then she went into a stage where she just colored large, monotone blobs. This week she’s taken to doing coloring pages, using multiple colors, and makes some attempt to stay within the lines.

And things are different at the hospital too. When we started, she’d be asleep for 3-4 minutes after getting back to the room. Then it was more like 10 or 15 minutes. This morning she was awake and smiling when they brought her into the room! That was a first, and fun to see.

Three days this week as she was being put to sleep, and I saw the meds going in and gave her a squeeze and whispered in her ear, “I love you, have a good nap, I’ll see you soon!” she asked, so cheerfully, “Daddy?” and promptly fell asleep. Oh, how I wish I could have heard her finish the question! Brad said “she smiles so big when she does that!”

Speaking of Brad, today was his last day treating Alice. He’s off next week. I’m pretty sure there was a tremor in his voice as he said to me, “My family and I are praying for you.” We hugged there in front of the radiation machine, Alice asleep on the table, and I thanked him for taking such good care of my little girl, and walked back upstairs. He’s been so great, so friendly, and we have fun visits together every morning. I’m going to miss him.

Alice and Violet this morning, just after radiation treatment #25

It now feels like we have friends at the hospital. Some of the nurses just stop in Alice’s room to say hi now. Martha is our favorite anesthesiology nurse, and whether or not she’s assigned to Alice, she comes in to say hi and visit. She’s so great. The other nurses do the same. Apparently there’s a bit of a competition going to get assigned to care for Alice. She’s won the hearts of the sedation unit. Not hard to believe, but still fun to hear. Amy told me today, “You guys have quite a fan club here.” Somehow everywhere we turn, we’re blessed with love and support.

We’d love to rest tomorrow, but we’re off for Gramma’s funeral after breakfast. We pray the gospel goes forth with power and clarity, for that would be Gramma’s greatest joy and a most fitting tribute to a life well lived.

Well, this has been long enough. Thank you for your prayers, for your kind comments which are always so treasured and uplifting to our hearts, and for the kind love and affection shown to us, by friends, family, and strangers alike. When we begin to feel we have been cursed, we can’t help but be overwhelmed by how deeply we are blessed.

I leave you with a gift of my own. Technically it’s the fulfillment of a promise I made last week, and maybe a reward for reading this far. Sunday night I knelt by Alice’s bed just after she crawled in. I asked if she wanted to say “The Lord is my Shepherd,” set my phone beside her with the recorder going, and here it is. For us, it’s perhaps the greatest 99 seconds of audio in the world.

Thirty seconds after this was done, while I “cozied” her, wrapping her up in my arms, she fell asleep. It was great.

top photo is Alice looking out the window of the plane on Sunday

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